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Dyadic predictors of psychosocial distress in patients undergoing autologous hematopoietc stem cell transplatn (HSCT)

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Dyadic predictors of psychosocial distress in patients undergoing autologous hematopoietc stem cell transplatn (HSCT)
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Geller, Jessica B. ( author )
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Hematopoietic stem cells -- Transplantation ( lcsh )
Self -- Social aspects ( lcsh )
Families ( lcsh )
Family psychotherapy ( lcsh )
Families ( fast )
Family psychotherapy ( fast )
Hematopoietic stem cells -- Transplantation ( fast )
Self -- Social aspects ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Hematopoietic stem cell transplantation (HSCT) is a medically and psychologically taxing procedure for patients and their caregivers. Couples in which one partner is undergoing HSCT are faced with navigating multiple life changes and dyadic psychosocial stressors. Although autologous HSCT is generally lower risk and with fewer complications, autologous HSCT patients experience similar, if not greater, rates of distress, depression, and anxiety than allogeneic HSCT patients. To date, there is limited research on autologous HSCT patients and partnered dyads in HSCT. The primary goal of this longitudinal study was to investigate if unique pre-transplant characteristics of the partnered dyad were predictive of and protective against post-transplant patient psychosocial distress. This study included 48 dyads, mean age 61.69 (SD = 8.65), inclusive of primarily male patients (66.7%), diagnosed with Multiple Myeloma (52.1%), with low disease risk (63.8%), and low psychosocial risk (91.4%). Dyads completed pre-transplant surveys assessing relationship satisfaction (Revised Dyadic Adjustment Scale), quantity of social support (Partner Responses to Cancer Inventory), social support effectiveness (Social Support Effectiveness-Questionnaire) and common dyadic coping (Dyadic Coping Inventory), with patients also answering questions assessing psychological distress (Brief Symptom Inventory-18), transplant-specific distress (Impact of Events Scale-Revised), and depression (Center for Epidemiological Studies Depression Scale). Patients completed a survey approximately one month post-transplant reassessing each measure of psychosocial distress. Using couples as the unit of analysis, results revealed relationship satisfaction was not a significant predictor of post-transplant patient psychosocial distress. Higher caregiver and patient perceived social support effectiveness were significant predictors of lower post-transplant patient depression. Furthermore, patient perception of support effectiveness was predictive of psychological distress and depression above and beyond both caregiver perception of support effectiveness and perceived quantity of time of support provided. Lastly, patients with higher common dyadic coping had lower post-transplant, transplant-specific distress. Clinical implications include informing potential ways to address or prevent psychosocial distress through focused dyadic interventions to enhance perceived support effectiveness and promote common dyadic coping early in treatment. Future research should further examine the interrelatedness between the overarching constructs in this study (relationship satisfaction, social support effectiveness, and common dyadic coping) to more fully understand their associations and impact on HSCT patient psychosocial distress.
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Includes bibliographical references.
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by Jessica B. Geller.

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Full Text
DYADIC PREDICTORS OF PSYCHOSOCIAL DISTRESS IN PATIENTS
UNDERGOING AUTOLOGOUS HEMATOPOIETIC STEM CELL TRANSPLANT
(HSCT)
by
JESSICA B. GELLER
B.A., University of Oregon, 2003
M.S., Tufts University School of Medicine, 2010
A thesis submitted to the
Faculty of the Graduate School of the
University of Colorado in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Clinical Health Psychology
2016


This thesis for the Doctor of Philosophy degree by
Jessica B. Geller
has been approved for the
Clinical Health Psychology Program
by
Krista Ranby, Chair
Kristin Kilbourn, Advisor
Andrea Maikovich-Fong
Teri Simoneau
Edward Dill


Geller, Jessica B., (Ph.D., Clinical Health Psychology)
Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous
Hematopoietic Stem Cell Transplant (HSCT)
Thesis directed by Associate Professor, Kristin Kilboum
ABSTRACT
Hematopoietic stem cell transplantation (HSCT) is a medically and psychologically
taxing procedure for patients and their caregivers. Couples in which one partner is
undergoing HSCT are faced with navigating multiple life changes and dyadic psychosocial
stressors. Although autologous HSCT is generally lower risk and with fewer complications,
autologous HSCT patients experience similar, if not greater, rates of distress, depression, and
anxiety than allogeneic HSCT patients. To date, there is limited research on autologous
HSCT patients and partnered dyads in HSCT. The primary goal of this longitudinal study
was to investigate if unique pre-transplant characteristics of the partnered dyad were
predictive of and protective against post-transplant patient psychosocial distress. This study
included 48 dyads, mean age 61.69 (SD = 8.65), inclusive of primarily male patients (66.7%),
diagnosed with Multiple Myeloma (52.1%), with low disease risk (63.8%), and low
psychosocial risk (91.4%). Dyads completed pre-transplant surveys assessing relationship
satisfaction (Revised Dyadic Adjustment Scale), quantity of social support (Partner
Responses to Cancer Inventory), social support effectiveness (Social Support Effectiveness-
Questionnaire) and common dyadic coping (Dyadic Coping Inventory), with patients also
answering questions assessing psychological distress (Brief Symptom Inventory-18),
transplant-specific distress (Impact of Events Scale-Revised), and depression (Center for
Epidemiological Studies Depression Scale). Patients completed a survey approximately one
month post-transplant reassessing each measure of psychosocial distress. Using couples as


the unit of analysis, results revealed relationship satisfaction was not a significant predictor
of post-transplant patient psychosocial distress. Higher caregiver and patient perceived social
support effectiveness were significant predictors of lower post-transplant patient depression.
Furthermore, patient perception of support effectiveness was predictive of psychological
distress and depression above and beyond both caregiver perception of support effectiveness
and perceived quantity of time of support provided. Lastly, patients with higher common
dyadic coping had lower post-transplant, transplant-specific distress. Clinical implications
include informing potential ways to address or prevent psychosocial distress through focused
dyadic interventions to enhance perceived support effectiveness and promote common dyadic
coping early in treatment. Future research should further examine the interrelatedness
between the overarching constructs in this study (relationship satisfaction, social support
effectiveness, and common dyadic coping) to more fully understand their associations and
impact on HSCT patient psychosocial distress.
The form and content of this abstract are approved. I recommend its publication.
Approved: Kristin M. Kilbourn
IV


I would like to dedicate this dissertation to my grandmother, Betty Geller (Nana).
Nana is 95 years old and has never stopped learning. She is the wisest, most resilient,
determined, and loving person I know. I am forever grateful for the support she provided
throughout this process and beyond.


ACKNOWLEDGMENTS
I would like to thank several notable faculty and staff without which this study would
not have been possible. First, I would like to thank my advisor, Dr. Kristin Kilbourn for her
consistent support, dedicated mentorship, guidance, and contributions at each stage through
completion of this study. I would also like to thank my dissertation chair, Dr. Krista Ranby,
who was instrumental in the initial exploration of dyadic coping and who provided dedicated
time and mentorship surrounding conducting study analyses with dyadic data, and reviewing
this document. I would like to thank Dr. Andrea Maikovich-Fong, Dr. Teri Simoneau, and
Dr. Dawn Speckhart for their key contributions in study development and implementation,
utilizing their extensive experience in psychosocial oncology and HSCT. Specifically, I
would like to further thank Dr. Andrea Maikovich-Fong for her significant time commitment
and dedication to the recruitment and enrollment of participants at CBCI, despite an
abundance of staff turnover and organizational changes. In addition, this project would not
have been possible without the contribution of the CBCI psychosocial team (Kristi Johnson,
LCSW, Janet Spradley, LCSW, Dr. Elissa Kolva, Dr. Darryl Etter, Dr. Jessica Ketterer, and
Rebekkah Erks, LCSW), who assissted with recruitment and enrollment. Furthermore, Rory
Young, Jamie Sidle, and Penny Odem aided in obtaining necessary patient medical data.
I would like to thank Dr. Benjamin Brewer from UCH for participating as a secondary
recruitment site, for his assistance getting this site up and running quickly, and for his
recruitment efforts. Furthermore I am grateful to Dr. Elissa Kolva, Dr. Tanisha Joshi, and
Lacey Clement, M. A. for their dedicated recruitment and enrollment efforts at UCH. Dr.
Kolva has additionally been a significant mentor and source of unwavering support
throughout the entire dissertation process. I would like to thank my mentors at Yale
vi


University, Department of Psychiatry including Dr. Dwain Fehon, Dr. Michael Hoge, Dr.
Kelly DeMartini, and Dr. Kathi Croce, who provided ongoing support and time to allow for
the completion of my dissertation while on my pre-doctoral internship. Furthermore, I would
like to thank Robert Geller, Jacqueline Hill, Irinna Papangeli, Lindsay Miller, Erin Markel,
and Mark Hibl for their unwavering encouragement throughout this process. Finally, I would
like to thank my faithful dissertation writing group member, Heidi Geller.
vn


TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION.............................................................1
Background and Significane.............................................1
Psychosocial Distress in HSCT..........................................2
Partnered Dyads in Oncology............................................4
Dyadic Adjustment and Relationship Satisfaction in HSCT................5
Social Support in HSCT.................................................7
Dyadic Coping in HSCT..................................................9
Contributions to the Literature.......................................11
Specific Aims and Hypotheses..........................................12
Conceptual Model......................................................13
II. METHOD..................................................................14
Study Setting.........................................................14
Recruitment and Enrollment Procedures.................................14
Data Collection Procedures............................................14
Recruitment Accrual and Attrition.....................................15
Participants..........................................................17
Measures..............................................................20
Data Analysis.........................................................26
III. RESULTS.................................................................28
Participant Characteristics...........................................28
Bivariate Correlations................................................28
viii
Test of Study Aims
31


IV. DISCUSSION...............................................................42
Overview..............................................................42
Discussion of Results Related to Study Aims...........................42
Future Research Directions............................................45
Clinical Implications.................................................47
Limitations...........................................................48
Conclusion............................................................50
REFERENCES...................................................................51
APPENDIX
A: Study Recruitment Flyer CBCI.......................................60
B: Study Recruitment Flyer UCH........................................61
C: Patient Consent Form CBCI..........................................62
D: Patient Consent Form UCH...........................................66
E: Caregiver Consent Form CBCI........................................70
F: Caregiver Consent Form UCH.........................................74
G: Patient Pre-Transplant Survey......................................78
H: Caregiver Pre-Transplant Survey....................................93
I: Patient Post-Transplant Survey....................................105
IX


LIST OF TABLES
TABLE
1. Characteristics of Participants...................................................18
2. Patient Medical Characteristics...................................................20
3. Variables, Measures/Sources of Data, Time Points, and Reporter....................25
4. Tests of Normality and Internal Consistency for Variables Used in Inferential Statistical
Analyses..............................................................................27
5. Bivariate Correlations Between Predictor Variables.................................29
6. Bivariate Correlations Between Predictor Variables, Covariates, and Patient Distress
Outcomes..............................................................................31
7. Summary of Regression Analysis for Caregiver and Patient Relationship Satisfaction
Predicting Post-Transplant Patient Psychosocial Distress..............................32
8. Summary of Regression Analysis for Caregiver and Patient Social Support Effectiveness
Predicting Post-Transplant Patient Psychosocial Distress..............................34
9. Summary of Regression Analysis for Caregiver and Patient Common Dyadic Coping
Predicting Post-Transplant Patient Psychosocial Distress..............................36
10. Summary of Multiple Regression Analysis for Social Support Effectiveness Predicting
Post-Transplant Patient Depression (CES-D)............................................38
11. Summary of Multiple Regression Analysis for Common Dyadic Coping Predicting Post-
Transplant Patient Transplant-Specific Distress (IES-R)...............................38
12. Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social
Support Effectiveness Scores Predicting Post-Transplant Patient Psychological Distress (BSI-
18)...................................................................................40
13. Summary of Hierarchical Linear Regression Analysis for Social Support Effectiveness
Predicting Post-Transplant Patient Depression (CES-D).................................40
x


LIST OF FIGURES
FIGURE
1. Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress..13
2. Flowchart of Recruitment Accrual and Attrition...............................17
3. Secondary Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial
Distress....................................................................37
xi


CHAPTER I
INTRODUCTION
Background and Significance
Hematopoietic stem cell transplantation (HSCT)1 can be lifesaving for patients with
certain cancers of the blood or bone marrow or in people who have hematological diseases.
According to the Center for International Blood and Marrow Transplant Research
(CIBMTR), in the United States in 2013, there were nearly 19,000 HSCTs, of which
approximately 11,000 were autologous transplants (Pasquini & Wang, 2014). In autologous
HSCT, patients own stem cells are harvested and infused back into the blood stream after
receiving high doses of chemotherapy and/or total body radiation (U.S. Department of Health
and Human Services, 2014). For patients undergoing allogeneic HSCT, which uses donor
stem cells, there are increased hospitalization stays, graft-versus-host disease risk, and other
acute and chronic complications (Copelan, 2006; Pasquini et al., 2014). For patients with
active diffuse large B cell Non-Hodgkin lymphoma, a common diagnosis, 100-day post-
transplant survival rates from 2008-2012 for patients undergoing autologous HSCT were
87.1% (Cl = 83.4-90.1%), and rates were significantly lower for allogeneic HSCT, using
cells from a sibling 71.8% (Cl 60.9- 80.1%) and even lower for unrelated donor HSCT
68.8% (Cl = 58.3 -77.2%) (U.S. Department of Health and Human Services, 2016). Multiple
myeloma is the most common indication for autologous HSCT and among the 33,800
1 The term hematopoietic stem cell transplant (HSCT) will be used throughout this
document. For the purposes of this document it is synonymous with stem cell transplant
(SCT), bone marrow transplant (BMT), and peripheral blood stem cell transplant (PBSCT).
1


patients receiving these transplants between 2002-2012; the 3-year probability of survival
was 74% 1% (Pasquini et al., 2014).
Autologous HSCT can be conducted on an outpatient or shortened inpatient basis,
and instrumental support demands from medical staff are generally less than those for
allogeneic HSCT patients, which may increase patient self-care and caregiver responsibilities
(Chow& Coyle, 2011; Garcia, Mumby, Thilges, & Stiff, 2012; Grimm, Zawacki, Mock,
Krumm, & Frink, 2000; Tecchio et al., 2013; Wulff-Burchfield, Jagasia & Savani, 2013).
Whether undergoing allogeneic or autologous HSCT, by the time the transplant takes place,
patients and their caregivers have most likely experienced a myriad of logistical
inconveniences and disruptions in their daily routines, often including temporarily relocating
or traveling long distances to transplant centers (Chow et al., 2011). They must also learn to
cope with numerous medical and psychosocial challenges, including distressing medical
procedures, protective isolation, restrictions in their routines, and acute and chronic side
effects (e.g., immunosuppression, infections, nausea, fatigue, cognitive impairment, and
sexual dysfunction), the threat of potential relapse and secondary cancers, financial
challenges, and changes in their domestic, social, and occupational roles (Bevans, Mitchell &
Marden, 2008; Chow et al., 2011; Mosher, DuHamel, Rini, Comer, Lam, J., & Redd, 2011;
Tecchio et al., 2013). Irrespective of transplant type, HSCT treatment and psychosocial
recovery is a long-term process that typically lasts longer than physical recovery
(Andrykowski et al., 2005).
Psychosocial Distress in HSCT
According to the National Comprehensive Cancer Network (1999), psychosocial
distress is an unpleasant emotional, psychological, social, or spiritual experience (on a
2


continuum from feelings of vulnerability, sadness, and fears, to problems that are disabling,
such as true depression), which interferes with the ability to cope with cancer treatment. In a
review of HSCT studies, Hjermstad and Kaasa (1995) found that overall mood disturbances
were greater in HSCT patients than in other cancer populations. Nearly one-third of HSCT
patients have symptoms consistent with a diagnosis of clinical depression (Siegel, 2008), and
some studies have shown that one-quarter of HSCT patients demonstrate avoidance stress
responses, while over one-third have significant intrusive thoughts pre-HSCT (Siston et al.,
2000). Specifically, in autologous HSCT patients, pre-HSCT levels of clinically-elevated
depression and cancer-related distress have ranged from 11% to 55%, with no differences
found between transplants conducted inpatient or outpatient (Frey et al., 2002; Grassi, Rosti
& Albertazzi, 1996; McQuellon et al., 1998; Sherman, Simonton, Latif, Spohn, & Tricot,
2004; Wettergren, Langius & Bjorkholm, 1997). Furthermore, when comparing rates of
psychological distress and associated quality of life between allogeneic and autologous
HSCT patients, studies show comparable (Andersson, Ahlberg, Stockelberg, & Persson,
2011; Hjermstad, Evensen, Kvaloy, Fayers, & Kaasa, 1999, Tecchio et al., 2013) or higher
depression and anxiety scores and lower quality of life scores for autologous HSCT patients
(Hjermstad et al., 1999; Hjermstad et al., 2004; Lee et al., 2001; Prieto et al., 2005).
Distress and depression often peak prior to transplant, during isolation, and during the
acute recovery phase; however, anxiety has been shown to vary widely across the entire
transplant timeline (Fife, Huster, Cornetta, Kennedy, & Akard, 2000; Hjermstad et al., 1999;
Mosher, Redd, Rini, Burkhalter & DuHamel, 2009; Prieto et al., 2005; Siegel, 2008; Siston et
al., 2001; Tecchio et al., 2013). Persistent levels of elevated distress are also common
(Hjermstad et al., 1999; Mosher et al., 2009; Rusiewicz, et al., 2008) with nearly one-fifth of
3


patients still exhibiting clinically-significant depressive symptoms five years post-HSCT
(Syrjala et al., 2004). Greater post-HSCT distress has been associated with longer hospital
stays and recovery time, worse physical and sexual functioning, treatment non-adherence,
symptom burden, pain intensity, fatigue, poor sleep, lower quality of life, and lower survival
rates (Andrykowski et al., 2005; Colon, Callies, Popkin & McGlave, 1991; Grulke, Larbig,
Kachele & Bailer, 2008; Hoodin, Kalbfleisch, Thornton & Ratanatharathom, 2004;
Humphreys, Tallman, Altmaier & Barnette, 2007; Loberiza et al., 2002; Prieto et al., 2002;
Rodrigue, Pearman & Moreb, 1999; Syrjala et al., 2004; Wingard, Curbow, Baker &
Piantadosi, 1991). In light of the rates of distress documented in HSCT patients and their
potential impacts long-term, it is important to have a greater understanding of specific factors
that may be protective against HSCT patient distress, anxiety, and depression (Cooke, Grant,
Eldredge, Maziarz, & Nail, 2011; Copelan, 2006; Wulff-Burchfield et al., 2013).
Partnered Dyads in Oncology
There has been a growing recognition of the importance of spousal relationships in
oncology research (Bishop et al., 2007; Boyle et al., 2000; Gaston-Johansson, Lachica, Fall-
Dickson, Kennedy, 2004; Langer, Abrams, & Syrjala, 2003; Langer, Brown, & Syijala,
2009). Often, disruption to the intimate relationship or poor adjustment to chronic diseases
and cancer results in worse patient outcomes, as studies indicate marital distress exerts
significant negative effects on immune function and health outcomes (Ben-Zur, Gilbar &
Lev, 2001; Northouse, Mood, Templin, Mellon & George, 2000). In particular, intimate
partner social support is an important predictor of patients cancer adaptation (Giese-Davis,
Hermanson, Koopman, Weibel & Spiegel, 2000; Manne, Pape, Taylor & Dougherty, 1999).
There is also growing literature recognizing the role of interdependence between
4


marital partners on cancer outcomes (Mickelson, Lyons, Sullivan & Coyne, 2001). Because
cancer affects both partners in a relationship, on an individual and couple level, it is
considered a dyadic stressor (Badr, Carmack, Kashy, Cristofanilli, & Revenson, 2010). On an
individual level, the stressor is experienced through the lens of ones own particular needs
and concerns. For example, patients could be more concerned about the long-term
implications of their illness, while partners may be preoccupied with the immediate
caregiving demands. At the couple level, relational well-being is influenced by the couples
ability to work together to manage aspects of the stressor that reciprocally affect them (Badr
et al., 2010). For example, how well does the couple make childcare decisions or manage
treatment decision-making or end-of-life issues. Maladaptive coping practices, such as
avoidant behaviors, denial, and social withdrawal, have been consistently associated with
increased levels of distress, anxiety, and depression among cancer patients and their partners
(Manne et al., 1999; Manne & Glassman, 2000).
For nearly 80% of HSCT patients, the designated caregiver is the patients romantic
partner, resulting in an interdependence of patients and their partners (T. Simoneau, personal
communication, June 27, 2014). This partnered dyad may provide a unique opportunity to
explore factors, which may be predictive of or protective against HSCT patient psychosocial
distress, that are inherent to an intimate partnership, such as relationship satisfaction (RS),
perception of partner support, and strength of dyadic coping.
Dyadic Adjustment and Relationship Satisfaction in HSCT
In particular, marital adjustment and satisfaction have been shown to be important
components of the cancer experience and in turn to psychological adjustment to cancer
(Banthia, Malcame, Vami, Ko, Sadler, & Greenbergs; 2003), with resilient couples growing
5


closer in the face of cancer (Drabe, Wittmann, Zwahlen, Biichi & Jenewein, 2013).
Furthermore, studies have demonstrated that couples who experience dissatisfying
relationship changes as part of the treatment process, report reduced spousal support, ability
to cope, decreased quality of life, as well as increased symptoms of psychological distress,
depression, and anxiety (Hagedoorn, Buunk, Kuijer, Wobbes & Sanderman, 2000; Northouse
et al., 2000). RS has been explored among samples including allogeneic and autologous
HSCT survivors (Andrykowski et al., 2005), where, relative to healthy controls, HSCT
survivors reported poorer dyadic adjustment and poorer RS.
In a systematic review by Beattie and Lebel (2011), five studies were identified
focused on HSCT patients and their spousal caregivers. Of these, four examined RS utilizing
the satisfaction subscale of the Dyadic Adjustment Scale (Langer, et al., 2003; Langer, Rudd,
& Syijala, 2007; Langer, et al., 2009; Langer, Yi, Storer, & Syrjala, 2010); however, only
three reported on patient outcomes. Langer et al. (2003) assessed change in RS and found
that partners were matched in perception pre-HSCT; however, at 6 months and one-year
post-HSCT caregivers reported significantly lower satisfaction than patients. Langer et al.
(2010) also assessed dyadic adjustment and change in RS, pre-HSCT and at 5 intervals up
until 5 years after transplant. They found that patient and male caregiver satisfaction was
stable over time, but female caregivers reported reductions in satisfaction at each time point.
Finally, Langer et al. (2009) found that the more caregivers and patients utilized protective
buffering or felt buffered, which refers to hiding cancer-related thoughts and concerns from
ones partner, both dyad members had decreased RS and decreased mental health.
These findings highlight that within the current HSCT dyad literature, studies focus
on dyadic adjustment, change in RS, or RS as an outcome. No current studies exist assessing
6


the impact of RS as a predictor of patient psychosocial outcomes. Furthermore, of the current
studies, RS is only assessed within heterogeneous (allogeneic and autologous) HSCT
populations, leaving room for further exploration of RS of partnered dyads within autologous
HSCT populations.
Social Support in HSCT
In HSCT, social support is a term that has been used to encompass quantity (reported
receipt of support, usually during a specific time period) and quality (perceived levels of
support) of support from family, friends, spouses, and caregivers (Barrera, 1986; Beattie,
Lebel & Tay et al., 2013). Higher perceived social support and stable pre-HSCT social
support have been associated with reduced post-HSCT distress, anxiety, post-traumatic stress
symptoms, and depression when controlling for initial levels of depression (Bevans,
Wehrlen, Prachenko, Soeken, Zabora & Wallen, 2011; Fife et al., 2000; Grassi et al., 1996;
Jacobsen et al., 2002; Jenks, Kettmann & Altmaier, 2008; Syrjala et al., 2004). However, in a
systematic review of the HSCT literature by Beattie et al. (2013), the authors reported that
the specific impact and benefits of the various attributes (quantity versus quality or
perception of quality) and specific types (e.g. instrumental, informational and emotional) of
support need to be further assessed to delineate what components of support, if any, have the
most impact on HSCT patient outcomes.
In a retrospective study of allogeneic patients focused on quantity of support,
researchers found survival outcomes were associated with greater caregiver visit frequency
and duration (Foster, McLellan, Rybicki, Dabney, Copelan & Bolwell, 2013). This study also
found that support from a designated caregiver correlates with better support and 4-year
survival rates; however, they did not investigate what aspects of the relationship are most
7


beneficial. Quality of social support may be particularly influential, as dyad research in
cancer indicates that partner intentions of being supportive are often not perceived as
supportive by patients (Manne, Ostroff, Winkel, Grana, & Fox, 2005; Schulz & Schwarzer,
2004). In particular, Frick, Motzke, Fischer, Busch, and Bumeder (2005), in autologous
HSCT patients, demonstrated that patients who perceived their support as problematic (e.g.,
felt criticized or victimized) had poorer survival rates.
A retrospective study by Rini et al. (2011) of autologous and allogeneic HSCT
survivors 1-3 years post-HSCT examined both the quantity and quality of support on patient
distress. In particular, the study focused on patients perception of social support
effectiveness (SSE) received from their partner across the domains of instrumental,
informational, and emotional support using the Social Support Effectiveness-Questionnaire
(Rini & Dunkel Schetter, 2010). Results revealed that perceived effectiveness, defined as
support that met the patients needs in terms of quantity and quality, was more influential in
predicting patient distress than quantity of support alone. Additionally, higher quantity of
support that was perceived as ineffective was associated with elevated patient distress on the
Brief Symptom Inventory (Derogatis, 2004), when controlling for sociodemographic and
medical characteristics.
These findings highlight that within the current HSCT literature, there are several
studies examining social support; however, most studies have been retrospective, and have
generally not included dyads in which both partners reports were gathered. Additionally,
existing studies have not specifically delineated the types of support that are most beneficial
to patients and why. Furthermore, much of current research has focused on heterogeneous
patient populations. The support needs for these two transplant populations may differ,
8


because autologous HSCT patients experience fewer treatment complications and physical
limitations than allogeneic HSCT patients (Eldredge, Nail, Maziarz, Hansen, Ewing, &
Archbold, 2006; T. Simoneau, personal communication, June 27, 2014). In sum, further
exploration across the domains of social support and its perceived effectiveness for patients
within the context of the partnered dyad would be valuable.
Dyadic Coping in HSCT
Terms such as dyadic, communal, interpersonal, relationship-focused, and
collaborative coping have been used to characterize interpersonal aspects of coping beyond
traditional ideas of social support (Ben-Zur et al., 2001). The concept of communal coping
was first described by Lyons, Mickelson, Sullivan, and Coyne (1998) as a dyadic process that
involves appraising a stressor (e.g. patients chronic condition) as our, rather than your or my,
problem and taking cooperative wv-based action to address it. Likewise, in dyadic coping the
couple collectively negotiates the emotional aspects of their shared experience or engages in
collaborative coping, such as joint problem-solving (Berg et al., 2008; Berg & Upchurch,
2007; Bodenman, 2008; Coyne & Smith, 1991). According to a dyadic perspective, when
couples face a common stressor, such as chronic illness, coping is broader than just support
received from a partner, including other stress management behaviors both partners engage
in together (Coyne & Smith, 1994). Although dyadic stressors affect both partners, most
research looking at couples coping with cancer focuses on the partner as provider of support,
and patient as the recipient of support, instead of a communal approach (Badr et al., 2010).
Communal coping has been assessed in the context of we talk use in a limited number
of chronic illness and oncology populations. In a study with heart failure patients and their
partners, researchers found that we talk use by partners during a conjoint interview, predicted
9


positive changes in patient symptoms independent of the influence of patient we talk use.
This highlights the significant role caregiver support can play in a patients health and the
importance of including a partners report in future studies (Rohrbaugh, Mehl, Shoham,
Reilly & Ewy, 2008). Additionally, in a study of families coping with breast cancer, partner
we talk use was associated with better dyadic adjustment and lower patient depressive
symptoms (Robbins, Mehl, Smith & Weihs, 2013).
The concept of communal coping has been operationalized through use of the Dyadic
Coping Inventory (DCI) and particularly, the joint (common) scale. Common dyadic coping
(CDC) assesses coping that occurs when both partners experience stress and symmetrically
work together to handle stressful situations using a we approach (Bodenmann, 2008). It
involves joint problem solving, coordinating everyday demands, relaxing together, as well as
mutual calming, sharing, and expressions of solidarity to help the other manage their stress
(Badr et al., 2010). CDC has been explored in recent studies of patients with chronic
obstructive pulmonary disease (Meier et al., 2007) and cancer (Badr et al., 2010) where it
was associated with lower levels of psychosocial distress. A longitudinal study by Badr et al.
(2010) among couples facing metastatic breast cancer demonstrated that higher levels of
CDC used to manage shared cancer stressors decreased partner cancer-related distress using
the Impact of Event Scale (Weiss & Marmar, 1997) and improved both patient and partner
RS using the Dyadic Adjustment Scale (Bodenmann, 2008). According to Badr et al. (2010),
future research should examine whether the benefits of engaging in CDC extend to helping
alleviate general distress and determining whether specifically cancer-related distress may be
a more appropriate target for intervention.
CDC has proven to be a valuable coping style in other chronic illness and cancer
10


populations. To date, no studies have been conducted in HSCT to assess the potential role or
benefit of CDC. This leaves room for exploration of this construct among partnered dyads as
a potential predictor of post-HSCT patient psychosocial distress.
Contributions to the Literature
Autologous HSCT patients are distinct from allogeneic in clinical presentation,
treatment options, recovery times, and mortality rates. Autologous HSCT patients have a low
likelihood of death and severe complications of HSCT, creating an opportunity to more
purely examine relationship factors and psychosocial outcomes, with possible broader
generalization of findings to other oncology patient populations (T. Simoneau, personal
communication, June 27, 2014). There is limited research focusing specifically on patients
undergoing autologous HSCT, demonstrating a need for closer examination of this
population (Garcia et al., 2012).
Most often in HSCT, caregivers are patients romantic partners, providing a rich
dyadic population with which to evaluate the influence of factors inherent in an intimate
partnership. Of the limited dyadic research in HSCT to date, there were minimal studies
assessing pre-HSCT factors unique to the dyad that may be predictive of patient post-HSCT
psychosocial outcomes. The limited existing studies on HSCT patients and their partnered
caregivers focused on dyadic adjustment or RS largely evaluating change over time or these
constructs as outcomes. No dyad studies were found assessing SSE and the specific domains
of support including instrumental, informational, and emotional support. Furthermore, CDC
has not been assessed in HSCT. These concepts (RS, SSE, and CDC) have also not been
examined together, further highlighting the potential benefit of this investigation.
11


Specific Aims and Hypotheses
There is limited research examining married/romantic partner dyads (referred to as
dyads' in the document) comprised of autologous HSCT patients (referred to as patients or
PT in the document) and their partnered caregivers (referred to as partners, caregivers,
or CG in the document). The purpose of this study was to further explore potential factors
predictive of and protective against post-HSCT patient psychosocial distress (referred to as
distress in the document and is inclusive of psychological distress, transplant-specific
distress, and depression). Specifically, this study aimed to increase understanding of how
pre-HSCT dyad relationship satisfaction (RS), social support effectiveness (SSE), and
common dyadic coping (CDC) impacted patient post-HSCT distress. The following aims and
hypotheses guided this study:
Aim 1. Does pre-HSCT RS predict post-HSCT patient distress, when controlling for
pre-HSCT patient distress?
Hypothesis 1.1. Pre-HSCT caregiver RS will be negatively associated with post-
HSCT patient distress.
Hypothesis 1.2. Pre-HSCT patient RS will be negatively associated with post-HSCT
patient distress.
Aim 2. Does pre-HSCT perceived SSE predict post-HSCT patient distress, when
controlling for pre-HSCT patient distress?
Hypothesis 2.1. Pre-HSCT caregiver SSE will be negatively associated with post-
HSCT patient distress.
Hypothesis 2.2. Pre-HSCT patient SSE will be negatively associated with post-HSCT
patient distress.
12


Aim 3. Does pre-HSCT CDC predict post-HSCT patient distress, when controlling
for pre-HSCT patient distress?
Hypothesis 3.1. Pre-HSCT caregiver CDC will be negatively associated with post-
HSCT patient distress.
Hypothesis 3.2. Pre-HSCT patient CDC will be negatively associated with post-
HSCT patient distress.
Aim 4. (Exploratory)
4.1 Test multivariate models with the significant predictors from Aims 1-3 to evaluate
which variables best predict post-HSCT patient distress.
4.2. Test a multivariate model to evaluate if caregiver or patient perceived quality of
support predicts post-HSCT patient psychosocial distress, above and beyond perceived
quantity of support provided.
Conceptual Model
A conceptual model (Figure 1) illustrated the proposed directionality of the
relationships between pre-HSCT dyad RS, SSE, and CDC and post-HSCT patient distress.
Numbered arrows correspond to Aims 1-3 above.
Figure 1. Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress
13


CHAPTER II
METHOD
Study Setting
This longitudinal study was conducted at the Colorado Blood Cancer Institute (CBCI)
at Presbyterian/St. Luke's Medical Center (P/SL) and at the Blood Cancer and Hematological
Malignancies and BMT Program at the University of Colorado Hospital (UCH).
Recruitment and Enrollment Procedures
After obtaining HCA-HealthONE Institutional Review Board and Colorado Multiple
Institutional Review Board approval, the doctoral student conducted staff trainings to
provide a study overview and distribute recruitment flyers (Appendix A and B). Psychosocial
staff (i.e., psychologists, psychology practicum students, and social workers) identified
participants for inclusion, primarily during the pre-HSCT patient intake. Designated staff
either consented participants or contacted the doctoral student with participants information
for follow-up. During consent, the study was explained in a private or semi-private area and
if both caregiver and patient understood the study information, and agreed to participate, they
were consented with separate consent forms (Appendices C, D, E and F).
Data Collection Procedures
Pre-Transplant Survey. Participants preferring web-based surveys received an e-
mail with a link to the survey and directions informing them they could start and stop the
survey as needed to complete it. Those preferring paper-based surveys were provided the
surveys in a envelope with the contact information for Dr. Maikovich-Fong or Dr. Brewer
(Appendices G and H). The majority of caregivers (64.6%) and patients (77.1%) preferred
web-based pre-HSCT surveys. Directions for both surveys asked participants to complete the
14


survey without their partner present to improve the likelihood of answering questions
truthfully, particularly those about RS. Participants were asked to complete the surveys at
least by the day of the patients transplant. Participants were contacted by phone or e-mail
approximately 5-10 days before it was a week from their transplant, reminding them to
complete their survey.
Post-Transplant Survey. The patient post-HSCT survey (Appendix I), was either: 1)
sent via e-mail with a link to the web-based survey, or 2) provided to patients in an envelope
approximately 28 days after the patients transplant date, give or take 5 days. The majority of
post-HSCT surveys (83.3%) were conducted by web because patients were discharged from
the hospital and some were not returning to clinic regularly. Patients were asked to complete
the survey within one week. Once received, the doctoral student attempted to double-check
that each question was answered and followed-up with participants to complete any missing
answers when possible. If the surveys were not received within one week, every attempt was
made in the form of reminder e-mails and phone calls to have the surveys completed and
returned. However, days post-HSCT for survey completion varied greatly with a mean of
37.49 (SD= 19.20).
Recruitment Accrual and Attrition
Recruitment lasted 12 months with the goal of recruiting a minimum of 35 couples.
This sample size was chosen based on the approximate number of new patients undergoing
HSCT at CBCI on an annual basis. In 2013, there were 238 transplants, 140 of which were
autologous HSCT and over three-fourths of caregivers were romantic partners (T. Simoneau,
personal communication, May 20 & June 27, 2014). It was assumed that for this study, of
those eligible, approximately 75% of couples would agree to participate, which would result
15


in 50 couples enrolled within 12 months (T. Simoneau, personal communication, May 20 &
June 27, 2014). This sample size was believed to be sufficient to test the research questions,
based on sample sizes of other similar dyad studies (Langer et al., 2009; Langer et al., 2007;
Meier et al., 2007; Regan et al., 2014).
At CBCI, recruitment and enrollment spanned from mid December 2014 to mid
December 2015. By early April 2015, enrollment was low, possibly due to stringent and
narrowly defined inclusion and exclusion criteria. The decision was made to include
participants undergoing a second transplant, and to add a secondary recruitment site. Dr.
Benjamin Brewer from UCH agreed to participate in the study. By early June 2015, final
institutional review board approval was obtained and recruitment and enrollment spanned
from early June 2015 to mid December 2015 at UCH.
At CBCI, 146 patients were screened for eligibility. Of those who met inclusion
criteria and simply declined to participate, reasons for non-participation included disinterest
in a psychological study, feeling overwhelmed, or feeling too busy. At UCH, information
was only available on 11 patients who were screened for eligibility. Overall, recruitment was
low at this site, with study staff citing that numerous participants simply declined to
participate. It was not possible to gather exact numbers of how many people were
approached about the study and declined and reasons for non-participation. Difficulty
collecting this information was due to staff turnover and detailed records not being kept by
some of the multiple UCH psychosocial staff members, despite attempts by the doctoral
student to gather this information. The final sample of participants that completed both pre-
and post-HSCT measures, included 48 couples, the majority (n = 41, 85.4%) of which were
from CBCI. See Figure 2 for complete recruitment accrual and attrition information.
16


Note: Denotes criteria changed April 2015 to include patients undergoing their second transplant.
Figure 2. Flowchart of Recruitment Accrual and Attrition
Participants
Inclusion Criteria. Caregivers and patients were required to: 1) be married or
partnered, co-habitating, and involved in a romantic relationship; 2) be 18 years of age or
older; and 3) be able to read, understand, and speak English because many study instruments
were only validated in English. Patients were required to: 1) be a candidate for an inpatient
or outpatient autologous HSCT; 2) plan to receive treatment at CBCI or E1CH; and 3) have a
pre-HSCT intake performed by a psychosocial team member.
Exclusion Criteria. Caregivers and patients were excluded if either had a current
physical, psychological, medical, or cognitive condition that was determined by Dr. Andrea
17


Maikovich-Fong at CBCI or Dr. Benjamin Brewer at UCH to interfere with their ability to
consent and/or participate. Additionally, patients with stiff person syndrome were excluded,
as they have unique complications outside of the study parameters.
Demographics, General Health, and Mental Well-Being. Patients were primarily
male (n = 32, 66.7%) and caregivers were primarily female (n = 32, 66.7%). Participants had
a mean age of 61.69 (SD = 8.65), were primarily Caucasian (89.6%), married (91.7%),
worked full- or part-time (51.0%), and were college educated (53.1%). All couples were
heterosexual (100.0%), had a mean length of relationship of 30.06 years (SD = 14.03), and
two couples (4.3%) were in couples therapy. The majority of caregivers (64.6%) and patients
(50.0%) rated their own health as excellent or very good and interestingly, caregivers
perceived the patients diagnosis as more severe than patients appraised the severity. Pre-
HSCT, fifteen participants (31.3%) reported having a diagnosis of anxiety and ten (22.9%)
reported having a diagnosis of depression. Refer to Table 1 for a summary of participant
demographics, general health, and mental well-being information.
Table 1.
Characteristics of Participants
Demographic Variables CG PT
Gender N (%)
Female 31 (64.6) 16 (33.3)
Male 17 (35.4) 32 (66.7)
Race/Ethnicity N (%)
Caucasian, Not of Hispanic Origin 42 (87.5) 44 (91.7)
Hispanic 3 (6.3) 1(2.1)
Black, Not of Hispanic Origin 1(2.1) 1(2.1)
Multi-Ethnic/Other 2 (4.2) 2 (4.2)
Age Mean (SD) 61.88 (8.20) 62.8 (7.37)
Children N (%) 43 (89.6)
Number of Children N (%)
1-3 38 (88.4)
4+ 4 (9.2)
Unreported Number of Children 1 (2.4)
Children Living in the Home N (%) 9(18.8)
18


Table 1 (cont.)
Education Level
<12th Grade 7(14.6) 7(14.6)
Some College 19 (39.6) 12 (25.0)
College Degree 12 (25.0) 13 (27.1)
Graduate Degree 10 (20.8) 16 (33.3)
Employment Status A (%)
Employed Full-Time 17 (35.4) 13 (27.1)
Employed Part-Time/Homemaker 8 (16.7) 8 (16.7)
Full-Time Student 3 (6.3) 0 (0.0)
Temporary Medical Leave/Disability 1(2.1) 12 (25.0)
Retired 16 (33.3) 13 (27.1)
Unemployed 3 (6.3) 0 (0.0)
Permanently Unable To Work 0 (0.0) 2 (4.2)
Household Income A (%)
$0 50,000 11 (23.0)
$50,001 100,000 21 (43.7)
100,001+ 16 (33.3)
General Health & Mental Well-Being Variables CG PT
Perceived Caregiving Length (Months) Median 6.50 (.50-243) 7.0(1 577)
(Range)
Perception of Patient Diagnosis Severity A (%)
Very Severe 30 (62.5) 21 (43.8)
Somewhat Severe 15 (31.3) 24 (50.0)
Mildly Severe 2 (4.2) 3 (6.3)
Not At All Severe 1(2.1) 0 (0.0)
Perception of Own Health A (%)
Excellent 11 (22.9) 6(12.5)
Very Good 20 (41.7) 18 (37.5)
Good 14 (29.2) 5 (10.4)
Fair 3 (6.3) 2 (4.2)
Chronic Health Condition A (%) 12 (25.0) 20 (41.7)
Chronic Health Condition Interference A (%)
Not At All 5 (41.7) 7 (35.0)
A Little 6 (50.0) 9 (45.0)
A Great Deal 1 (8.3) 4 (20.0)
Current Mental Health Diagnoses A (%)
Anxiety 7(14.6) 8 (16.7)
Depression 5 (10.4) 6(12.5)
Current Psychotropic Medication A (%) 7 (77.8) 8 (72.7)
Current Individual Counseling/Therapy A (%) 2 (22.2) 0 (0.0)
Patient Medical Characteristics. The majority of patients were undergoing their
first autologous HSCT (93.8%) and were considered low disease risk (63.8%) by the
International Blood and Marrow Transplant Research criteria (CIBMTR), and low
psychosocial risk (91.4%) as determined by the Transplant Evaluation Rating Scale (TERS).
19


The most common diagnosis was Multiple Myeloma (52.1%), followed by Non-Hodgkins
Lymphoma (43.8%). Patient medical characteristics are located in Table 2.
Table 2.
Patient Medical Characteristics
Patient Medical Variables N (%) Mean (.S'/))
Length of Illness (Months) 25.24 (39.23)
Comorbidities 1.90 (2.08)
Low/Intermediate 33 (68.8)
High 15 (31.3)
Length of Hospitalization (Days) 22.02 (6.80)
Before Transplant 5.15 (2.85)
After Transplant 17.91 (5.09)
Inpatient Transplant 46 (95.8)
Transplant Number
1 45 (93.8)
2 2 (4.2)
3 1(2.1)
Clinical Diagnoses
Multiple Myeloma 25 (52.1)
Non-Hodgkins Lymphoma 21 (43.8)
Hodgkins Lymphoma 1(2.1)
Other 1(2.1)
Disease Stage
Diffuse Large B-cell Lymphoma 13 (26.5)
MMIgG 11 (22.4)
MM Light Chain 7(14.3)
Disease Risk
Low 30 (63.8)
Intermediate 11 (23.4)
High 6(12.8)
KPS 90.83 (9.64)
Psychosocial Risk (TERS)
Low 42 (91.4)
Moderate 4 (8.7)
High 0 (0.0)
Note: KPS = Kamofsky Physical Functioning Score; TERS = Transplant Evaluation Rating Scale
Measures
Data were gathered through two mechanisms: 1) patient pre- and post-HSCT surveys
and a caregiver pre-HSCT survey, and 2) patient medical database review post-discharge. A
description of variables, measures/sources of data, data collection time points, and reporters
can be found in Table 3. Measures were scored according to commonly used procedures so
20


results could be easily compared to existing studies. Tests of normality and internal
consistency for variables used in inferential statistical analyses can be found in Table 4.
Demographics, General Health, and Mental Well-Being. Caregiver and patient
were assessed for demographic, general health, and mental well-being information pre-HSCT
through self-report. To limit burden, only patients were asked relationship status, length of
time in a relationship, number of children, and household income questions. These answers
were used as proxy for their partner. A complete list of information gathered through self-
report is located in Table 3.
Relationship Satisfaction. Caregiver and patient relationship satisfaction was
assessed pre-HSCT through a self-report measure, the Revised Dyadic Adjustment Scale
(RDAS). This measure assesses seven dimensions of couples relationships within three
overarching categories including consensus in decision making, values and affection;
satisfaction in the relationship with respect to stability and conflict regulation; and cohesion
as seen through activities and discussion (Busby, Christensen, Crane, & Larson, 1995).
Ratings are on a scale from 0-4 (never to everyday) or from 0-5 (always disagree to
always agree or all the time to never or never to more often), with items 7, 8, 9,
and 10 reverse scored. Scores of 48 and above indicate relationship non-distress and scores
of 47 and below indicate relationship distress. Higher scores on the satisfaction subscale
indicate greater RS. For this study, the RDAS satisfaction subscale scores (summed) were
used as continuous variables in inferential statistical analyses.
Social Support Caregiver and patient social support quantity and perceived
effectiveness were assessed pre-HSCT through separate self-report measures.
Social Support Quantity. The Partner Responses to Cancer Inventory (PRCI)
21


assesses the frequency with which partners provide specific types of instrumental (e.g.
household chores or errands), informational (e.g. advice or guidance), and emotional support
(e.g. empathy or affection) (Manne & Schnoll, 2001). For this study, language was adapted
to reflect that patients were having an upcoming transplant. The caregiver measure was
adapted to assess their perception of quantity of support provided to their partner. Ratings are
on a scale from 1-4 (never responds this way to often responds this way), with higher
scores indicating greater quantity of support in the prior month. For this study, PRCI total
scores (averaged) were used as continuous variables in inferential statistical analyses.
Social Support Effectiveness. The Social Support Effectiveness Questionnaire
(SSE-Q) assesses perceived SSE across the domains of instrumental, informational, and
emotional support (Rini & Dunkel Schetter, 2010). For this study, the time period was
adapted from past three months to past month and adaptions were made to the caregiver
measure to include language assessing their perceived effectiveness supporting their partners.
Questions assessed: 1) how well quantity matched amount needed on a scale from 0-4 (very
poor to excellent); 2) the extent to which the patient wished support had been different on
a scale from 0-4 (not at all to extremely); 3) the extent to which support was provided
skillfully on a scale from 0-4 (not at all to extremely); 4) how difficult support was to get
on a scale from 0-4 (never to always); and 5) whether support was offered without being
asked on a scale from 0-4 (never to always). Ten additional items assessed unintended
negative byproducts of receiving support (e.g., feelings of guilt or indebtedness with 0 being
yes and 2 no). Higher scores indicate more effective support. For this study, SSE-Q total
scores (summed) and instrumental, informational, and emotional subscale scores (each
summed) were used as continuous variables in inferential statistical analyses.
22


Dyadic Coping. Caregiver and patient common dyadic coping was assessed pre-
HSCT through a self-report measure, the Dyadic Coping Inventory (DCI). This measure
assesses dyadic coping and perceived communication of couples under stress (Bodenmann,
2008; Ledermann et al., 2010). Dyadic coping is assessed as a multidimensional construct
that includes: supportive, delegated, negative, and joint (common) dyadic coping rated on a
scale from 1-5 (very rarely to very often). CDC assesses when both partners experience
stress and symmetrically work together to handle stressful situations, and higher scores
indicate greater communal coping. Scores of less than 111 indicate below average dyadic
coping, scores of 111-145 indicate normal dyadic coping, and scores greater than 145
indicate above average dyadic coping. For this study, the joint (common) subscale scores
(summed) were used as continuous variables in inferential statistical analyses.
Psychosocial Distress. Patient distress was assessed pre- and post-HSCT through
three separate self-report measures of: 1) psychological distress, 2) transplant-specific
distress, and 3) depression.
Psychological Distress. The Brief Symptom Inventory 18 (BSI-18) assesses
psychological distress and psychiatric disorders in medical and community populations
(Derogatis, 2004). Items measure depression, anxiety, somatization, and general distress
(global severity index: GSI) over the last week on a scale from 0-4 (not at all to
extremely). Scores are converted to a standardized score (T-score). Higher scores indicate
more psychological distress. Clinically meaningful psychological distress is indicated by a T-
score greater than 63. For this study, BSI-18 total T-scores were used as continuous variables
in inferential statistical analyses.
23


Transplant-Specific Distress. The Impact of Event Scale Revised (IES-R) assesses
subjective distress related to a specific stressor (Weiss & Mannar, 1997). For this study, the
measure was adapted to ask respondents to focus on the patients transplant as the stressful
event. Verbiage for the pre-HSCT survey asked about the upcoming transplant and items 7,
14, and 17 were modified to reflect that the transplant had not yet occurred. Adaptations such
as these have been made in other dyad studies assessing the upcoming BMT (Siston et al.,
2001) and your and your spouses cancer and HCT (Bishop et al., 2007). Participants
indicated how much they were distressed or bothered by difficulties associated with this
event during the past week from 0-4 (not at all to extremely), with higher scores
indicating more transplant-specific distress. For this study, IES-R total scores (summed) were
used as continuous variables in inferential statistical analyses.
Depression. The Center for Epidemiological Studies Depression Scale (CES-D)
assesses depressive symptoms (Radioff, 1977). Items measure how often depressive
symptoms were experienced in the past week on a scale from 0-3 (rarely or none of the
time: less than one day to most or all of the time: five to seven days). The CES-D is
scored by reversing items 4, 8, 12, and 16, then summing all responses, with higher scores
reflecting a higher level of depression (Raldoff, 1977). A score of 16 or more suggests a
clinical level of depression. For this study, CES-D total scores (summed) were used as
continuous variables in inferential statistical analyses.
Medical Information. Relevant patient medical information was assessed after
discharge by the doctoral student, with the help of identified data personnel at each site. Of
note, comorbidities were physician determined according to the Hematopoietic Cell
Transplant-Co-morbidity Index (HCT-CI), disease risk was physician determined according
24


to the Center for International Blood and Marrow Transplant Research criteria (CIBMTR),
and psychosocial risk was determined by a psychosocial team member after intake according
to the Transplant Evaluation Rating Scale (TERS). A full list of information collected can be
found in Table 3.
Table 3.
Variables, Measures/Sources of Data, Time Points, and Reporter
Variable Category Measures/Sources of Data Time Point Report
Demographics, General Health, and Mental Well-Being Date of birth, gender, racial/ethnic background, education level, employment status, occupation, caregiving length, general health status, perceived severity of patient illness, chronic conditions or illnesses, current mental health diagnoses, current psychotropic medications, current psychotherapy or counseling Pre-HSCT CG/PT
Number of children, household income, relationship status, length of time in relationship Pre-HSCT PT
Predictors Relationship Satisfaction (RS) Social Support Perceived Quantity Perceived Effectiveness (SSE) Common Dyadic Coping (CDC) RDAS RS: Revised Dyadic Adjustment Scale, Satisfaction Subscale PRCI: Partner Responses to Cancer Inventory SSE-Q: Social Support Effectiveness Questionnaire DCI CDC: Dyadic Coping Inventory, Joint (Common) Dyadic Coping Subscale Pre-HSCT CG/PT
Outcomes Pre- & PT
Psychological Distress BSI-18: Brief Symptom Inventory-18 Post-
Transplant-Specific Distress Depression IES-R: Impact of Events Scale-Revised CES-D: Center for Epidemiological Studies Depression Scale HSCT
Medical Information Inpatient/outpatient status, clinical diagnosis, length of illness before transplant, disease stage, transplant date, comorbidities, disease risk, length of hospitalization before and after transplant, Kamofsky physical functioning score psychosocial risk, discharge date Post-HSCT PT
25


Data Analysis
Descriptive Statistics. Data collected with Redcap software was analyzed using IBM
SPSS software. Data were restructured so that the unit of analyses was the couple.
Descriptive statistics were used to describe the data and correct any errors in data entry.
Univariate analyses (e.g. frequencies, histograms, and measures of central tendency) revealed
no outliers or violations to normality. Because regression analyses were conducted at the
couple level, the assumption of independence was not violated. It was also noted that no
predictor variables were extremely correlated (r > .80) suggesting that measures were
assessing unique constructs. This reduced concern for issues of multicollinearity that could
arise during exploratory analyses that included multiple predictors. It was not necessary to
transform or evaluate data using nonparametric methods. Means and standard deviations of
measures are in Table 4.
Missing Data. As anticipated, there was minimal missing data; no pre-HSCT
variables were missing more than 2 responses and no post-HSCT variables were missing any
responses. As a result, it was not necessary to use statistical methods to address the issue of
missing data.
Statistical Analysis. Correlations were performed at multiple time points during the
data analyses. Bivariate correlations between all measured variables were examined to
understand the relationships between variables. A series of linear regressions were conducted
to determine which pre-HSCT constructs (RS, SSE, and CDC) separately predicted post-
HSCT patient distress (psychological distress, transplant-specific distress, and depression),
when controlling for pre-HSCT distress. Separate regressions were run using the caregiver
and patient scores. For the exploratory analyses, the significant predictors from the linear
26


regressions were assessed in a series of multiple regressions and hierarchical linear
regression models. Caregiver and patient scores were both included in models to investigate
their ability to predict patient distress.
Table 4.
Tests of Normality and Internal Consistency for Variables Used in Inferential Statistical
Analyses________________________________________________________________________
Pre-HSCT: Mean (SD) Skewness Kurtosis Cronbachs Number Possible
CG Variables (Std. Error) (Std. Error) alpha of Items Range
RDAS RS 16.29 (1.91) -0.84 (0.34) 0.53 (0.67) 0.67 4 0-20
PRCI 3.62 (0.34) -0.86 (0.34) -0.21 (0.68) 0.66 8 1-4
SSE-Q Total 58.35 (8.63) -0.40 (0.34) -0.85 (0.67) 0.87 25 0-80
SSE-Q Instrumental 14.90 (2.35) -0.27 (0.34) -0.58 (0.67) 0.70 5 0-20
SSE-Q Informational 14.48 (2.50) -0.72 (0.34) 0.13 (0.67) 0.60 5 0-20
SSE-Q Emotional 15.08 (2.69) -0.69 (0.34) 0.26 (0.67) 0.72 5 0-20
DCI CDC 17.54 (4.66) -0.34 (0.34) -0.06 (0.67) 0.83 5 0-25
Pre-HSCT: Mean (SD) Skewness Kurtosis Cronbachs Number Possible
PT Variables (Std. Error) (Std. Error) alpha of Items Range
RDAS RS 16.08 (1.69) -0.89 (0.34) 0.06 (0.67) 0.55 4 0-20
PRCI 3.55 (0.40) 0.83 (0.35) 0.01 (0.68) 0.70 8 1-4
SSE-Q Total 65.06 (9.91) 0.72 (0.34) 0.11 (0.67) 0.91 25 0-80
SSE-Q Instrumental 16.15 (2.69) -0.65 (0.34) 0.26 (0.67) 0.75 5 0-20
SSE-Q Informational 15.44 (2.81) -0.03 (0.34) 0.28 (0.67) 0.82 5 0-20
SSE-Q Emotional 15.94 (3.24) -0.94 (0.34) -0.64 (0.67) 0.88 5 0-20
DCI CDC 17.88 (3.93) -0.24 (0.34) -0.22 (0.67) 0.89 5 0-25
BSI-18 50.00 (10.00) 1.43 (0.35) 2.14 (0.68) 0.87 18 0-72
IES-R 15.26 (13.76) 0.75 (0.35) -0.80 (0.68) 0.94 22 0-88
CES-D 10.00 (8.62) 1.40 (0.35) 1.52 (0.68) 0.88 20 0-60
Post-HSCT: Mean (SD) Skewness Kurtosis Cronbachs Number Possible
PT Variables (Std. Error) (Std. Error) alpha of Items Range
BSI-18 50.00 (10.00) 0.80 (0.34) 0.03 (0.67) 0.77 18 0-72
IES-R 7.58(9.13) 1.62 (0.34) 1.76 (0.67) 0.93 22 0-88
CES-D 11.85 (7.57) 1.47 (0.34) 2.83 (0.67) 0.86 20 0-60
Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale);
PRCI = Partner Responses to Cancer Inventory (Quantity of SSE); SSE-Q = Social Support Effectiveness -
Questionnaire; (Instrumental, Informational, Emotional Subscales); DCI CDC = Dyadic Coping Inventory
(Common Dyadic Coping Subscale); BSI-18 = Brief Symptom Inventory 18 (Psychological Distress); IES-R
= Impact of Event Scale Revised (Transplant-Specific Distress); CES-D = Center for Epidemiological Studies
Depression Scale (Depression)
27


CHAPTER III
RESULTS
Participant Characteristics
For the RDAS (total score), caregivers had a mean score of 52.57 (SD = 7.56) and
patients had a mean score of 52.72 (SD = 6.78). Thirty-five caregivers (76.1%) and patients
(74.5%) had scores above the cut off score of 48, indicating that most relationships were
perceived to not be in distress. With regard to dyadic coping, for the total score of those who
completed the DCI, the mean caregiver score was 132.68 (SD = 19.02) and the mean patient
score was 137.48 (SD = 15.51). Of those who completed the DCI, five caregivers (10.6%)
and three patients (7.7%) had below average total scores; thirty-one caregivers (66.0%) and
twenty-five patients (64.1%), reported scores within the normal range; and eleven caregivers
(23.4%) and eleven patients (28.2%) appraised their dyadic coping as above average.
With regard to the two study outcome variables with cut off scores, BSI-18 scores
indicated that five patients (10.6%) pre-HSCT and five patients (10.4%) post-HSCT had
scores indicating clinically meaningful psychological distress. Only one patient had clinically
elevated BSI-18 scores both pre- and post-HSCT. Depression as assessed by the CES-D,
indicated pre-HSCT nine patients (19.1%), and post-HSCT, fourteen patients (29.2%), had
clinically significant levels of depression. Only six patients had clinically elevated CES-D
scores both pre-and post-HSCT. Of the 33 patient scores that indicated clinically significant
distress, only two patients had clinically elevated scores pre- and post-HSCT on both
measures.
Bivariate Correlations
In order to evaluate the relationships between the predictor variables (RS; SSE total,
instrumental, informational and emotional subscales; and CDC), bivariate correlations were
28


conducted. Correlations among these variables were positively correlated as expected, but
not so highly correlated to raise concern that they were measuring the same construct.
Interestingly, reports within couples of the same constructs were only moderately correlated
(RDAS RS r = .44, SSE-Q Total r = .36, DCI CDC r = .51) suggesting some unique
information was gained by assessing both partners. All correlations revealed that significant
relationships were in the hypothesized direction.
Additionally, the caregiver SSE-Q (total) was significantly associated with caregiver
informational (r = .75,p < .01), and emotional (r = .83,/? < .01) subscales. The caregiver
SSE-Q informational and emotional subscales were significantly associated (r = .72, p < .01).
Additionally, the patient SSE-Q instrumental subscale was significantly associated with the
patient informational (r = .16, p < .01), and emotional (r = .78,/? < .01) subscales. The
patient SSE-Q informational and emotional subscales were significantly associated (r = .80,
p < .01). Lastly, patient SSE-Q (total) was significantly associated with patient instrumental
(r = .87,/? < .01), informational (r = .91 ,P< .01), and emotional (r = .85,/? < .01) subscales.
Overview of these correlational relationships can be found in Table 5.
Table 5.
Bivariate Correlations Between Predictor Variables
CG PT CG CG CG CG PT PT PT PT CG CG
RDAS RDAS SSE-Q SSE SSE SSE SSE-Q SSE SSE SSE DCI DCI
RS RS Total Inst. Info. Emo. Total Inst. Info. Emo. CDC CDC
CG RDAS RS 1.00
PT RDAS RS 44* * 1.00
CG SSE-Q Total .50** .38** 1.00
CG SSE-Q Instrumental 47* * .39** .60** 1.00
CG SSE-Q Informational .41* .31* .75** .62** 1.00
CG SSE-Q Emotional .31* .22 .83** 44* * 72* * 1.00
PT SSE-Q Total .24 .45** .36* .51** 42* * .20 1.00
29


Table 5 (cont.)
PT SSE-Q Instrumental .18 .36* .32* 42* * .31* .22 g7* * 1.00
PT SSE-Q Informational .23 .45** .35* .46** 49* * .23 9 j* * .76** 1.00
PT SSE-Q Emotional .20 .36* .23 47* * .39** .08 .85** 7g* * .80** 1.00
CG DCI CDC .63** .29* .45* 4g* * 47* * .43** .20 .10 .15 .24 1.00
PT DCI CDC .35* 42* * .23 .23 .38** .25 .29* 1.97 .34* .34* .51**
* p < .05, ** p < .01 (two-tailed)
Note: All participants completed each of these measures and the numbers are out of 48 couples.
Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale);
SSE-Q = Social Support Effectiveness Questionnaire (Instrumental, Informational, Emotional Subscales);
DCI CDC = Dyadic Coping Inventory (Common Dyadic Coping Subscale)
Regarding correlations between predictors and patient distress, no caregiver
predictors were significantly correlated with pre- or post-HSCT patient distress. The only
predictors significantly correlated with pre-HSCT distress (IES-R) were patient SSE-Q total
(r = -31,p < .05) and patient SSE-Q instrumental (r = -.37,p < .05). Regarding post-HSCT
distress, patient SSE-Q total was negatively correlated with BSI-18 (r = -.30, p < .05), IES-R
(r = -.35,p < .05), and CES-D (r = -.39,p < .01). Patient SSE-Q instrumental and
informational subscale scores were negatively correlated with IES-R (r = -32, p < .05; r = -
.34,p < .05) and CES-D (r = -.29,p < .05; r = -35,p < .05) and patient SSE-Q informational
was negatively correlated with BSI-18 (r = -31, p < .05). Patient DCI CDC was negatively
correlated with post-HSCT BSI-18 (r = -.30, p < .05). The significant correlations were all in
the expected direction. Lastly, all three pre-HSCT measures of distress correlated with each
post-HSCT measure of distress as expected. Overview of these correlational relationships can
be found in Table 6.
Potential covariates for use in the exploratory analyses were assessed with bivariate
correlations. The demographic and medical variables that were significantly correlated with
the post-HSCT measures of distress, as well as patient diagnosis of depression, days post-
HSCT survey completion, and caregiver and patient PRCI were included as control variables
30


in the exploratory analyses. Bivariate correlations of significant covariates are located in
Table 6.
Table 6.
Bivariate Correlations Between Predictor Variables, Covariates, and Patient Distress
Outcomes
Pre- HSCT BSI-18 Pre- HSCT IES-R Pre- HSCT CES-D Post- HSCT BSI-18 Post- HSCT IES-R Post- HSCT CES-D
Predictors
CG RDAS RS -.06 -.01 .09 -.07 -.04 -.04
PT RDAS RS -.01 .00 .08 -.12 -.11 -.15
CG SSE-Q Total -.22 -.02 .02 -.04 -.08 -.22
CG SSE Instrumental -.13 .01 .14 -.02 .06 -.11
CG SSE Informational -.18 .10 .01 -.10 .07 -.13
CG SSE Emotional -.04 .14 .11 .08 .08 -.04
PT SSE-Q Total -.17 -.31* -.27 -.30* -.35* -.39**
PT SSE Instrumental -.08 -.37* -.18 -.21 -.32* -.29*
PT SSE Informational -.20 -.27 -.23 -.31* -.34* -.35*
PT SSE Emotional -.08 -.20 -.09 -.18 -.26 -.19
CG DCI CDC .08 .19 .20 .05 .16 .03
PT DCI CDC -.19 .06 -.15 -.30* -.23 -.26
Pre-HSCT
BSI-18 1.00 .67** .65** .52** .55** .57**
IES-R .67** 1.00 .69** .32* .57** .38**
CES-D .65** .69** 1.00 .48** .59** .56**
Covariates
CG Education -.18 .07 .00 -.29* -.14 -.25
CG Anxiety Dx .06 .13 .05 .21 .29* .23
PT Education -.30* -.15 -.13 -.24 -.17 -.24
PT Anxiety Dx .22 .27 .37* .12 .22 .29*
PT Depression Dx .24 .41* .44** .11 .23 -.01
Psychosocial Risk .53** .38* .48** .37* .44** .32*
Household Income -.29* -.35* -.20 -.11 -.19 -.14
** p < .01, p < .05 (two-tailed)
Note: Nranges from 44-48
Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale);
SSE-Q = Social Support Effectiveness Questionnaire (Instrumental, Informational, Emotional Subscales);
DCI CDC = Dyadic Coping Inventory (Common Coping Subscale); BSI-18 = Brief Symptom Inventory 18
(Psychological Distress); IES-R = Impact of Event Scale Revised (Transplant-Specific Distress); CES-D =
Center for Epidemiological Studies Depression Scale (Depression)
Test of Study Aims
For Aims 1-3, a series of linear regressions were conducted to determine which pre-
HSCT constructs (RS, SSE, and CDC) separately predicted patient post-HSCT distress
31


(psychological distress, transplant-specific distress, and depression), when controlling for
patient pre-HSCT distress.
Aim 1. Does pre-HSCT RS predict post-HSCT patient distress, when controlling for
pre-HSCT patient distress?
Hypothesis 1.1. Pre-HSCT caregiver RS will be negatively associated with post-
HSCT patient distress.
Caregiver RDAS RS and the three measures of patient distress were used to test this
hypothesis, for a total of 3 separate regression analyses. Caregiver RS was not a significant
predictor of post-HSCT patient distress. Regression coefficients are presented in Table 7.
Hypothesis 1.2. Pre-HSCT patient RS will be negatively associated with post-HSCT
patient distress.
Patient RDAS RS and the three measures of patient distress were used to test this
hypothesis, for a total of 3 separate regression analyses. Patient RS was not a significant
predictor of post-HSCT patient distress (Table 7).
Table 7.
Summary of Regression Analysis for Caregiver and Patient Relationship Satisfaction
Predicting Post-Transplant Patient Psychosocial Distress
Outcome Variable Variables B SE B ft T P R 2 F P
Post-HSCT BSI-18
CG Predictor Model 1 .27 8.14 .00
Control: Pre BSI-18 .52 .13 .52 4.00 .00
CG RDAS RS -.19 .68 -.04 -.27 .79
PT Predictor Model 1 .28 8.70 .00
Control: Pre BSI-18 .52 .13 .52 4.06 .00
PT RDAS RS -.72 .77 -.12 -.94 .35
Post-HSCT IES-R
CG Predictor Model 1 .33 10.74 .00
Control: Pre IES-R .38 .08 .57 4.62 .00
CG RDAS RS -.18 .59 -.04 -.31 .76
PT Predictor Model 1 .34 11.28 .00
Control: Pre IES-R .38 .08 .57 4.67 .00
PT RDAS RS -.60 .66 -.11 -.91 .37
32


Table 7 (cont.)
Post-HSCT CES-D
CG Predictor Model 1 .32 10.52 .00
Control: Pre CES-D .50 .11 .57 4.57 .00
CG RDAS RS -.37 .49 -.09 -.75 .46
PT Predictor Model 1 .35 11.91 .00
Control: Pre CES-D .51 .11 .58 4.74 .00
PT RDAS RS -.87 .54 -.19 11.57 .12
*p < .05
Note: N= 48
Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale);
BSI-18 = Brief Symptom Inventory 18 (Psychological Distress); IES-R = Impact of Event Scale Revised
(Transplant-Specific Distress); CES-D = Center for Epidemiological Studies Depression Scale (Depression)
Aim 2. Does pre-HSCT perceived SSE predict post-HSCT patient distress, when
controlling for pre-HSCT patient distress?
Hypothesis 2.1. Pre-HSCT caregiver SSE will be negatively associated with post-
HSCT patient distress.
Four measures of caregiver SSE and the three measures of patient distress were used
to test this hypothesis, for a total of 12 separate regression analyses. A significant association
was found between SSE-Q (total) and post-HSCT patient depression (CES-D). Specifically,
caregiver SSE-Q (total) negatively predicted depression (ft = -.24,p< .01) as hypothesized.
No other measures of caregiver SSE were predictive of any of the patient distress measures.
Regression coefficients are presented in Table 8.
Hypothesis 2.2. Pre-HSCT patient SSE will be negatively associated with post-HSCT
patient distress.
Four measures of patient SSE and the three measures of patient distress were used to
test this hypothesis, for a total of 12 separate regression analyses. A significant association
was found between SSE-Q (total) and post-HSCT patient depression (CES-D). Specifically,
patient perceived SSE-Q (total) negatively predicted patient depression (ft = -.25, p < .01), as
hypothesized. No other measures of patient SSE were predictive of any of the patient distress
measures (Table 8).
33


Table 8.
Summary of Regression Analysis for Caregiver and Patient Social Support Effectiveness
Predicting Post-Transplant Patient Psychosocial Distress
Outcome Variable Variable B SE B ft t P R 2 F P
Post-HSCT
BSI-18 Model 1 .27 8.12 .00
Control: Pre BSI-18 .52 .13 .51 3.88 .00
CG CG SSE-Q Total -.04 .16 -.03 -.24 .81
Predictors Model 1 .27 8.17 .00
Control: Pre BSI-18 .53 .13 .52 4.04 .00
CG SSE Instrumental .19 .55 .04 .34 .73
Model 1 .27 8.09 .00
Control: Pre BSI-18 .52 .13 .52 3.95 .00
CG SSE Informational -.04 .54 -.01 -.07 .94
Model 1 .28 8.59 .00
Control: Pre BSI-18 .53 .13 .52 4.08 .00
CG SSE Emotional .44 .51 .11 .86 .39
PT Model 1 .27 8.12 .00
Predictors Control: Pre BSI-18 .35 .09 .51 3.88 .00
PT SSE-Q Total -.02 .09 -.03 -.24 .81
Model 1 .30 9.33 .00
Control: Pre BSI-18 .51 .13 .50 4.04 .00
PT SSE Instrumental .64 .47 -.17 -1.35 .18
Model 1 .32 10.11 .00
Control: Pre BSI-18 .48 .13 .48 3.73 .00
PT SSE Informational -.78 .45 -.22 -.72 .09
Model 1 .29 8.90 .00
Control: Pre BSI-18 .51 .13 .51 3.98 .00
PT SSE Emotional -.43 .39 -.14 -1.90 .28
Post-HSCT
IES-R Model 1 .33 10.84 .00
Control: Pre IES-R .38 .08 .57 4.59 .00
CG CG SSE-Q Total -.06 .13 -.06 -.48 .63
Predictors Model 1 .33 10.88 .00
Control: Pre IES-R .38 .08 .57 4.63 .00
CG SSE Instrumental .26 .48 .07 .53 .60
Model 1 .33 10.67 .00
Control: Pre IES-R .38 .08 .57 4.59 .00
CG SSE Informational .04 .45 .01 .10 .92
Model 1 .33 10.67 .00
Control: Pre IES-R .38 .08 .57 4.59 .00
CG SSE Emotional .01 .42 .00 .03 .98
PT Model 1 .36 12.26 .00
Predictors Control: Pre IES-R .34 .09 .51 4.06 .00
PT SSE-Q Total -.17 .12 -.19 1.47 .15
Model 1 .34 11.25 .00
Control: Pre IES-R .35 .09 .53 4.00 .00
PT SSE Instrumental -.40 .45 -.12 -.89 .38
Model 1 .37 12.62 .00
Control: Pre IES-R .35 .08 .52 4.15 .00
PT SSE Informational -.66 .40 -.20 1.63 .11
34


Table 8 (cont.)
Model 1 Control: Pre IES-R PT SSE Emotional .36 -.42 .08 .35 .54 -.15 4.36 -1.19 .00 .24 .35 11.72 .00
Post-HSCT
CES-D Model .37 13.09 .00
Control: Pre CES-D .50 .11 .57 4.73 .00
CG CG SSE-Q Total -.21 .11 -.24 -2.02 .05*
Predictors Model 1 .35 11.88 .00
Control: Pre CES-D .50 .11 .59 4.79 .00
CG SSE Instrumental -.61 .39 -.19 -1.56 .13
Model 1 .34 11.23 .00
Control: Pre CES-D .50 .11 .56 4.59 .00
CG SSE Informational -.47 .38 -.15 -1.23 .22
Model 1 .33 10.80 .00
Control: Pre CES-D .51 .11 .57 4.62 .00
CG SSE Emotional -.36 .37 -.12 -.97 .34
PT Model 1 .38 13.20 .00
Predictors Control: Pre CES-D .44 .11 .49 3.99 .00
PT SSE-Q Total -.19 .09 -.25 -2.06 .05*
Model 1 .35 11.98 .00
Control: Pre CES-D .47 .11 .53 4.27 .00
PT SSE Instrumental -.55 .35 -.20 -1.60 .12
Model 1 .37 12.86 .00
Control: Pre CES-D .45 .11 .51 4.13 .00
PT SSE Informational -.64 .33 -.24 -1.94 .06
Model 1 .34 11.10 .00
Control: Pre CES-D .49 .11 .55 4.45 .00
PT SSE Emotional -.33 .29 -.14 -1.15 .26
*p < .05
Note: N= 48
Note: CG = Caregiver; PT = Patient; SSE-Q = Social Support Effectiveness Questionnaire (Instrumental,
Informational, Emotional Subscales); BSI-18 = Brief Symptom Inventory 18 (Psychological Distress); IES-R
= Impact of Event Scale Revised (Transplant-Specific Distress); CES-D = Center for Epidemiological Studies
Depression Scale (Depression)
Aim 3. Does pre-HSCT CDC predict post-HSCT patient distress, when controlling
for pre-HSCT patient distress?
Hypothesis 3.1. Pre-HSCT caregiver CDC will be negatively associated with post-
HSCT patient distress.
Caregiver DCI CDC and the three measures of patient distress were used to test this
hypothesis, for a total of 3 separate regression analyses. Caregiver CDC was not a significant
predictor of post-HSCT patient distress. Regression coefficients are presented in Table 9.
35


Hypothesis 3.2. Pre-HSCT patient CDC will be negatively associated with post-
HSCT patient distress.
Patient DCI CDC and the three measures of patient distress were used to test this
hypothesis, for a total of 3 separate regression analyses. A significant association was found
between patient DCI CDC and patient post-HSCT transplant-specific distress (IES-R).
Specifically, patient CDC negatively predicted patient transplant-specific distress (fi = -21, p
< .01), as hypothesized (Table 9).
Table 9.
Summary of Regression Analysis for Caregiver and Patient Common Dyadic Coping
Predicting Post-Transplant Patient Psychosocial Distress
Outcome Variable Variable B SE B fi t P R 2 F P
Post-HSCT BSI-18
CG Model 1 .27 8.09 .00
Predictor Control: Pre BSI-18 .36 .09 .52 4.00 .00
CG DCI CDC .01 .17 .01 .06 .96
PT Model 1 .31 9.95 .00
Predictor Control: Pre BSI-18 .48 .13 .48 3.76 .00
PT DCI CDC -.54 .33 -.21 -1.65 .11
Post-HSCT IES-R
CG Model 1 .33 10.81 .00
Predictor Control: Pre IES-R .38 .08 .56 4.46 .00
CG DCI CDC .11 .25 .06 .44 .67
PT Model 1 .40 14.65 .00
Predictor Control: Pre IES-R .39 .08 .59 5.03 .00
PT DCI CDC -.63 .27 -.27 -.23 .03*
Post-HSCT CES-D
CG Model 1 .32 10.52 .00
Predictor Control: Pre CES-D .51 .11 .58 4.58 .00
CG DCI CDC -.15 .21 -.09 -.75 .46
PT Model 1 .35 11.80 .00
Predictor Control: Pre CES-D .47 .11 .53 4.33 .00
PT DCI CDC -.36 .24 -.19 -1.52 .14
*p < .05
Note: N= 48
Note: CG = Caregiver; PT = Patient; DCI CDC = Dyadic Coping Inventory (Common Coping Subscale); BSI-
18 = Brief Symptom Inventory 18 (Psychological Distress); IES-R = Impact of Event Scale Revised
(Transplant-Specific Distress); CES-D = Center for Epidemiological Studies Depression Scale (Depression)
Summary of Aims 1-3. An updated conceptual model (Figure 3) reflects the
significant predictors and outcomes, based on the findings from aims 1-3. Findings revealed:
36


Aim 1) neither caregiver or patient RDAS RS scores were predictive of post-HSCT patient
distress, Aim 2) both caregiver and patient SSE-Q (total) scores were predictive of post-
HSCT depression, and Aim 3) only patient DCI CDC scores were predictive of post-HSCT
patient transplant-specific distress.
Figure 3. Secondary Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial
Distress
Aim 4. (Exploratory)
4.1 Test multivariate models with the significant predictors from Aims 1-3 to evaluate
which variables best predict post-HSCT patient distress.
This analysis assessed the relationship between SSE-Q scores (total) and CES-D
scores when controlling for pre-HSCT and identified covariates (see Table 10), to see what
was predictive of post-HSCT patient CES-D. Sixty-three percent of the variance in CES-D
was explained by this model. Patient anxiety diagnosis, patient depression diagnosis, and
patient pre-HSCT CES-D were predictive of post-HSCT CES-D (fi = .08 ,p< .05; p = -.61 ,p
< .001; p = .52, p < .01, respectively). Of primary interest, higher patient SSE was
significantly associated with lower CES-D scores (P = -31 p < .05). Regression coefficients
are located in Table 10.
37


Table 10.
Summary of Multiple Regression Analysis for Social Support Effectiveness Predicting
Patient Post-Transplant Patient Depression (CES-D)
Outcome Variable B SE ft t P R2 F P
Variable___________________________________________B___________________________________________
Post-
HSCT Model 1 .63 6.19 .00
PT Anxiety Dx 5.16 2.55 .08 .25 .05*
PT Depression Dx -14.51 3.48 -.61 -4.16
Psychosocial Risk .50 .33 .21 1.51 .14
Pre-HSCT CES-D .54 .12 .52 3.76 .00**
Days Post-HSCT SurveyC -.06 .05 -.15 -1.22 .23
CG PRCI 1.42 2.91 .06 .49 .63
PT PRCI 5.49 2.92 .29 1.88 .07
CG SSE-Q Total -.10 .11 -.11 -.90 .37
PT SSE-Q Total -.24 .11 -.31 -2.17 .04*
* p < .05, ** p < .01, *** p < .001
Note: N= 42
Note: CG = Caregiver; PT = Patient; CES-D = Center for Epidemiological Studies Depression Scale
(Depression); PRCI = Partner Responses to Cancer Inventory (Quantity of SSE); SSE-Q = Social Support
Effectiveness Questionnaire
This analysis assessed the relationship between DCI CDC scores and IES-R scores
when controlling for pre-HSCT IES-R, and identified covariates (See Table 11), to see what
was predictive of post-HSCT patient IES-R. Fifty-nine percent of the variance in IES-R was
explained by this model. Caregiver anxiety diagnosis and patient pre-HSCT IES-R were
predictive of post-HSCT patient IES-R (ft = .31,/? < .05; f}= Alp < .01, respectively). Of
primary interest, higher patient CDC was significantly associated with lower IES-R scores (ft
= -.45 p < .01). Regression coefficients are located in Table 11.
Table 11.
Summary of Multiple Regression Analysis for Common Dyadic Coping Predicting Post-
Transplant Patient Transplant-Specific Distress (IES-R)
Outcome Variable Variable B SE B ft t P R2 F P
Post-
HSCT Model 1 .59 5.91 .00
IES-R CG Anxiety Dx 7.55 3.17 .31 2.38 .03*
Psychosocial Risk .60 .45 .21 1.34 .19
Pre-HSCT IES-R .29 .09 .42 3.06 .00**
Days Post-HSCT SurveyC .02 .07 .03 .23 .82
CG PRCI 2.94 3.65 .11 .80 .43
PT PRCI .10 3.62 .00 .03 .98
38


Table 11 (cont.)
.54 .28
-1.05 .36
.27 1.96 .06
-.45 -2.94 .01**
CG DCI CDC
______________PT DCI CDC
* p < .05, ** p < .01
Note: = 41
Note: CG = Caregiver; PT = Patient; IES-R = Impact of Event Scale Revised (Transplant-Specific Distress);
PRCI = Partner Responses to Cancer Inventory (Quantity of SSE); DCI CDC = Dyadic Coping Inventory
(Common Dyadic Coping Subscale)
4.2. Test a multivariate model to evaluate if caregiver or patient perceived quality of
support predicts post-HSCT patient psychosocial distress, above and beyond perceived
quantity of support provided.
In an attempt to replicate findings from Rini et al. (2011), which found that perceived
quality of SSE was predictive of psychological distress above and beyond perceived quantity
of support (PRCI), three separate hierarchical linear regressions were conducted. Only the
models with significant findings are reported here. In the first hierarchical linear model, in
the first step, demographic and medical variables, pre-HSCT patient BSI-18, and days post-
HSCT survey completion accounted for 30% of the variance in post-HSCT BSI-18 scores (R2
= 0.30, F(4, 38) = 3.98,/) < 0.01). Adding caregiver and patient PRCI scores (step 2) and
caregiver SSE scores (step 3) did not significantly improve the prediction (R2 change = 0.01,
F(6, 36) = .37,p < 0.69; A2 change = 0.01, F(7, 35) = .55,p < 0.46). Finally, in step 4 when
SSE-Q (total) patient score was added to the model, this significantly improved the
prediction (R2 change = 0.08, F(8, 324) = 4.66,p < 0.04), accounting for 40% of the variance
in post-HSCT patient BSI-18 scores. In the final model, pre-HSCT patient SSE was
significantly associated with post-HSCT patient BSI-18 (fi = -.36, p < .04). Regression
coefficients are located in Table 12.
39


Table 12.
Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social
Support Effectiveness Predicting Post-Transplant Patient Psychological Distress (BSI-18)
Variable B Step 1 SEB P B Step2 SEB P Step 3 B SEB P Step 4 B SEB P
CG Education -5.15 4.12 -.18 -5.01 4.25 -.18 -5.43 4.31 -.19 -6.06 4.11 -.21
Psychosocial Risk .12 .52 .04 .13 .55 .04 .15 .55 .05 .04 .53 .01
Pre-HSCT BSI-18 .43 .16 .44* .44 .17 .45* .42 .17 .42* .39 .16 .40*
Days Post SurvC .05 .07 .10 .03 .08 .06 .02 .08 .04 -.02 .08 -.04
CG PRCI .44 4.70 .11 3.94 4.83 .14 4.34 4.60 .15
PT PRCI .02 4.28 .03 .43 4.31 .02 4.54 4.52 .18
CG SSE-Q Total -.13 .17 -.11 .01 .18 .01
PT SSE-Q Total -.37 .17 -.36*
A F for Step 3.98* .37 .55 4.66*
A R 2 for Step .30 .01 .01 .08
F for Full Model 2.86*
R 2 for Full Model .40
* p < .05
Note: N= 42
Note: CG = Caregiver; PT = Patient; Brief Symptom Inventory 18 (Psychological Distress); PRCI = Partner
Responses to Cancer Inventory (Quantity of SSE); SSE-Q = Social Support Effectiveness Questionnaire
In the second hierarchical linear regression, in the first step, demographic and medical
variables, pre-HSCT patient CES-D, and days post-HSCT survey completion accounted for
51% of the variance in post-HSCT patient CES-D scores (R2 = 0.51, F(5, 37) = 7.60, p <
0.00). Adding caregiver and patient PRCI scores (step 2) and caregiver SSE scores (step 3)
did not significantly improve the prediction (R2 change = 0.02, F(2, 35) = .73, p < 0.49; R2
change = 0.05, F( 1, 34) = 3.89,p < 0.06). Finally, in step 4 when SSE-Q (total) patient score
was added to the model this significantly improved the prediction (R2 change = 0.05, F( 1, 35)
= 4.72, p < 0.04), accounting for 63% of the variance in post-HSCT patient CES-D scores. In
the final model, pre-HSCT patient SSE was significantly associated with post-HSCT patient
CES-D (fi = -3\,p < .04). Regression coefficients are located in Table 13.
Table 13.
Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social
Support Effectiveness Scores Predicting Post-Transplant Patient Depression (CES-D)
Variable B Step 1 SEB /} B Step2 SEB P B Step 3 SEB P B Step 4 SEB P
PT Anx. Dx 4.97 2.75 .24 5.03 2.80 .24 5.34 2.69 .26 6.16 2.55 .25
PT Depr. Dx -13.47 3.59 -57** -14.57 3.77 ^ J * -13.74 3.65 -.58** -14.51 3.48 ^ J *
40


Table 13 (cont.)
Psycho. Risk .56 .34 .24 .48 .36 .20 .44 .34 .19 .50 .33 .21
Pre-CESD .52 .12 .60*** .53 .13 .62*** .53 .12 * * .45 .12 .52*:
Day P SurvC .01 .05 .01 -.01 .05 -.03 -.03 .05 -.07 -.06 .05 -.15
CG PRCI -.24 3.11 -.01 1.01 3.06 .05 1.42 2.91 .06
PT PRCI 3.12 2.87 .16 2.70 2.76 .14 5.49 2.92 .29
CG SSE-Q Total -.21 .11 -.23 -.10 .11 -.11
PT SSE-Q Total -.23 .11 -.31*
A F Step 7.60*** .73 3.89 4.72:
A R 2 Step .51 .02 .05 .05
FFull Model 6.19***
R2 Full Model______________________________________________________________________________________.63
* p < .05, ** p < .01, *** p < .001
Note: N=A2
Note: CG = Caregiver; PT = Patient; CES-D = Center for Epidemiological Studies Depression Scale
(Depression); PRCI = Partner Responses to Cancer Inventory (Quantity of SSE); SSE-Q = Social Support
Effectiveness Questionnaire
41


CHAPTER IV
DISCUSSION
Overview
Undergoing hematopoietic stem cell transplantation (HSCT) is a physically and
psychologically taxing medical event that can significantly impact patients and their
caregivers. The primary goal of this longitudinal study was to increase understanding of
relationship variables of romantic partnered dyads and to determine the characteristics that
best predicted distress in patients who recently underwent HSCT. The study hypothesized
that higher levels of relationship satisfaction (RS), perceived social support effectiveness
(SSE), and common dyadic coping (CDC), would be associated with lower levels of post-
HSCT patient distress. Several of the study hypotheses were supported suggesting that
relationship characteristics may be associated with post-HSCT patient psychosocial
outcomes.
Discussion of Results Related to Study Aims
Summary of Significant Findings. Findings revealed that higher caregiver and
patient perceived support effectiveness (SSE) were significant predictors of lower post-
HSCT patient depression (CES-D), when controlling for pre-HSCT patient depression.
Furthermore, patient perception of SSE was predictive of psychological distress (BSI-18) and
CES-D above and beyond both perceived quantity of time of support provided (PRCI) and
caregiver SSE such that higher patient SSE predicted lower post-HSCT patient BSI-18 and
CES-D scores. Lastly, it was found that higher patient CDC was predictive of lower post-
HSCT patient transplant-specific distress (IES-R), when controlling for pre-HSCT patient
transplant-specific distress.
Relationship Satisfaction. Contrary to what was hypothesized, neither caregiver nor
42


patient relationship satisfaction predicted post-HSCT patient distress. However, these results
are not entirely unexpected considering that the majority of caregivers (76.1%) and patients
(74.5%) reported low levels of relationship distress and high levels of relationship
satisfaction leading to a lack of variability in these scores. This could be a function of the
couples who agreed to participate in this study given the study was advertised as a study of
relationship satisfaction. Interestingly, other HSCT dyad studies investigating relationship
satisfaction (Langer et al., 2003; Langer et al., 2009; Langer et al., 2010) also reported high
patient and caregiver RS pre-HSCT, and these studies also found patient RS scores remained
stable over time, while caregiver RS decreased over time (Langer et al., 2003), especially for
female caregivers (Langer et al., 2010).
Social Support Effectiveness. The findings from this prospective dyadic dissertation
study expand upon the retrospective study of HSCT survivors 1-3 years post-HSCT by Rini
et al. (2011), in which patient reported SSE was negatively associated with psychological
distress (BSI Full Measure). Rini and colleagues found that quantity of partner support was
not associated with distress and an interaction revealed that when social support was
perceived as effective, the quantity of support survivors received was not significantly
associated with distress. Interestingly, in this dissertation, both higher caregiver and patient
SSE were predictive of lower post-HSCT patient CES-D specifically. Furthermore, higher
pre-HSCT patient SSE was predictive of lower post-HSCT patient distress (BSI-18 and CES-
D) above and beyond caregiver and patient perceived quantity of support provided, and
caregiver SSE.
It was anticipated that findings from this dissertation could also highlight specific
domains of SSE (instrumental, informational, or emotional) predictive of patient distress. In
43


bivariate correlation analyses, instrumental and informational domains had significant
negative correlations with IES-R and CES-D, and the instrumental domain was significantly
negatively correlated with BSI-18. This suggests the potential importance of targeting
specific components of social support in psychosocial interventions with this population.
This study addresses several of the weaknesses of previous HSCT social support
studies as highlighted in a systematic review by Beattie et al. (2013). Some of the previous
weaknesses that were addressed in this study included: 1) the use of a prospective design, 2)
assessment of both quantity versus quality of support, 3) investigation into the specific types
of support (instrumental, informational, emotional), and 4) patient and caregiver reports of
social support.
Common Dyadic Coping. This study did not find a significant relationship between
caregiver CDC and post-HSCT patient distress on any of the distress measures. This was
contrary to what was hypothesized and also different from previous studies of communal
coping, assessed through conjoint interview, in which caregiver we talk was associated with
improved patient outcomes in heart transplant (Rohrbaugh et al., 2008), and higher dyadic
adjustment and lower depressive symptoms in breast cancer patients (Robbins et al., 2013).
However, the qualitative interview methodology used in these two studies was quite distinct
from the current study, which makes it challenging to compare results.
This dissertation study found that patient CDC was not predictive of post-HSCT BSI-
18 or CES-D, when controlling for pre-HSCT distress. However, higher patient CDC was
associated with lower post-HSCT patient IES-R. Furthermore, when controlling not only for
pre-HSCT IES-R, but for covariates identified in correlational analyses, caregiver diagnosis
of anxiety was associated with post-HSCT patient IES-R. These results are similar to
44


findings in other literature demonstrating that caregivers of patients undergoing HSCT can
experience high levels of psychosocial distress (Molassiotis et al., 2011) and that there is a
significant bidirectional relationship between HSCT patient and caregiver psychological
distress (Hodges, Humphris, & Macfarlane, 2005).
Badr et al. (2010), who assessed couples facing metastatic breast cancer, found that
CDC was associated with lower IES-R for caregivers and slightly higher IES-R for patients.
Although the results differ in each of our studies, the dissertation study further highlights
what Badr et al. (2010) suggested, which was that addressing distress associated with the
event specifically (i.e., transplant or cancer) through the IES-R may be a more appropriate
target for intervention than general distress.
Future Research Directions
The goal of the current study was to increase understanding regarding caregiver-
patient relationship factors and their ability to predict post-HSCT patient distress. Regarding
RS, based on the findings from this dissertation and other HSCT studies, it appears that RS
may be relatively stable over time for patients. However, identifying couples who
specifically have lower RS pre-HSCT or having a stronger focus on caregiver RS may be an
important focus of future research. Regarding dyadic coping, other oncology studies have
investigated the relative contribution of other subscales of the Dyadic Coping Inventory aside
from CDC (Badr et al., 2010; Regan et al., 2014). Thus, future investigations in HSCT
caregivers and patients may also benefit from looking at other dyadic coping subscales that
assess other qualities of dyadic coping. Furthermore, future studies of the constructs
evaluated in this study, which include assessment of pre- and post-HSCT caregiver distress
and its association with dyad-specific factors would be valuable as many studies highlight the
45


significant distress caregivers of patients undergoing HSCT experience (Kim, Carver, Rocha-
Lima, & Schaffer, 2011; Soothill, Morris, Thomas, Harman, Francis, Mclllmurray, 2003;
Siston et al., 2001).
A primary goal for future research is to explore the interrelatedness of the predictors
investigated in this study. Correlational analyses in this dissertation and recent literature
highlight that the constructs appear to significantly impact one another. For example, RS was
utilized as a predictor of dyadic coping in a study of partners and patients with prostate
cancer (Regan et al., 2014), and RS was found to be significantly associated with patient and
spouse use of positive and negative dyadic coping. Furthermore, Manne et al. (2005) found
that perception of support might be as important as the dyadic coping behavior itself. Badr et
al. (2010) also found that higher levels of CDC were associated with higher levels of
caregiver and patient dyadic adjustment. Furthermore, a recent systematic review of dyadic
coping and relationship functioning in couples coping with cancer by Traa et al. (2015)
highlighted that a metatheory linking different dyadic coping approaches with social support
models in couples is needed.
It would also be valuable to explore dyadic relationship factors in expanded
populations. This could include allogeneic transplant patients, other oncology and chronic
illness populations, and solid organ transplant patients and their caregivers. Some of these
populations, solid organ transplant patients in particular, generally require a designated
caregiver and undergo an extensive post-transplant process. Furthermore, in addition to
psychosocial distress, it would be beneficial to assess if the predictors from this study are
associated with other health-related outcomes including morbidity and mortality rates. For
example, in the social support literature, Frick et al. (2005) used the Illness Specific Scales of
46


Social Support with autologous HSCT patients, and found that patients who had high
problematic social support subscale scores had poorer survival rates.
Clinical Implications
There are several valuable clinical implications of this study that highlight the
potential importance of: 1) enhanced psychosocial screening to identify at-risk dyads who
may have a mismatch in support provided versus support that is perceived as effective or
who have highly individualistic coping styles, and 2) pre-HSCT dyadic interventions aimed
at enhancing perceived SSE and CDC in dyads reporting high levels of distress. Specific
interventions aimed at improving SSE and CDC in at risk dyads have not be formally
developed, but a potential framework for HSCT dyadic interventions could come from
Couple's Coping Enhancement Training (CCET) and Coping Oriented Couples Therapy
(COCT) (Bodenmann & Randall, 2012; Bodenmann & Shantinath, 2004).
CCET and COCT are derived from couples stress and coping research. These phased
interventions focus on skills, such as enhancing awareness and sensitivity to each others
stress, enhancing communication to respond to stress, strengthening mutual problem-solving,
and providing feedback on the effectiveness of the support. Randomized controlled trials
comparing COCT to cognitive behavioral therapy and interpersonal therapy demonstrated
COCT is associated with greater RS and intimacy, positive communication, more frequent
dyadic coping (Bodenmann, Pihet, Shantinath, Cina & Widmer, 2006), and better dyad
psychological well-being (Pihet, Bodenmann, Cina, Widme & Shantinath, 2007). To date, no
scientific literature describing or testing this therapy in medical settings was found; however,
it appears abbreviated elements could be leveraged for dyads undergoing HSCT.
47


Currently, within transplant programs such as the Colorado Blood Cancer Institute
(CBCI) and the Blood Cancer and Hematological Malignancies and BMT Program at the
University of Colorado Hospital (UCH), pre-HSCT psychosocial intakes are conducted, in
which valuable information is gained about the perceived quality of intimate partner
relationships and the perception of ones overall support system. This step in the pre-HSCT
psychosocial team evaluation could be extended to include more detailed interview questions
or utilization of specific measures assessing the constructs of SSE or CDC to more clearly
understand a couples dyadic functioning. Furthermore, these concepts could be addressed in
the pre-HSCT caregiver course, and more specifically with at risk dyads through more
focused individual and couples therapy (as described above), or within group interventions.
Limitations
There were several limitations of this study. First, having only 48 couples may have
impacted the ability to detect significant relationships between some of the variables due to
a lack of power. Estimates and standard errors suggest that a larger sample size could have
aided in detecting significance. The study was also underpowered to investigate possible
interactions. Although significant associations were identified, future research should
attempt to replicate these findings in a larger study population. Other limitations included
the high potential for type I error associated with the numerous individual regressions that
were conducted. However, these regressions did control for pre-HSCT distress, and
knowing that the outcomes were associated with pre-HSCT distress is valuable for future
intervention development.
Like many studies of this type, there was a potential for selection bias given that not
all couples undergoing HSCT agreed to participate in the study. As mentioned earlier, the
48


majority of couples who agreed to participate in this study did not report relationship
distress, and had low psychosocial risk scores. Those who chose not to participate may have
experienced more distress within their relationships. Furthermore, of those who did not
participate, a higher percentage of patients had moderate (18.8%) or high (4.7%)
psychosocial risk. Therefore, the sample may not be representative of all autologous HSCT
patients and their partnered caregivers. Additionally, because this study focused on
partnered dyads, the results cannot be generalized to other relationships such as family
members or friends who serve as caregivers. Furthermore, the results are not generalizable to
allogeneic transplant patients, as they undergo different treatment trajectories that involve
higher risk. The sample was also mainly Caucasian, male patients with high income and
education levels, which is consistent with other published literature on HSCT samples
(Langer et al., 2009; Langer et al., 2010; Rini et al., 2011); however, future efforts
enhancing recruitment of more diverse samples would be a valuable endeavor.
The range of cancer treatment histories (e.g., time since diagnosis, treatments
received etc.) may have impacted the outcomes examined in this study. Patients who had
been recently diagnosed could have had higher levels of distress as a result of the relatively
recent medical news. Conversely, patients coping with their illness for longer periods of
time may have had more time to adapt to the stress of their illness, reporting less distress.
Additionally, it was not possible to control for number of visits or time spent with a
psychosocial team member over the course of the transplant process. Patients who received
more support from the psychosocial team may have had decreased distress. This information
would be valuable to collect in future studies, as it may impact distress levels. Lastly, the
likely impact that caregiver distress would have on patient distress was not fully accounted
49


for in this study; however, caregiver self-reported mental health diagnoses that were
significantly correlated with post-HSCT distress, were controlled for in the exploratory
analyses.
Conclusion
By assessing partnered dyads in which one person was undergoing autologous HSCT,
this study enhanced our understanding of pre-HSCT support and relationship factors unique
to the partnered dyad and their impact on post-HSCT patient distress. This study is the first
study in an HSCT population to: 1) evaluate relationship satisfaction as a predictor of post-
HSCT patient distress, 2) evaluate the influence of perceived social support effectiveness
prospectively using dyadic data with the couple as the unit of analysis, and finally, 3)
evaluate the construct of common dyadic coping. This study lays the groundwork for
continued evaluation of relationship factors that may impact HSCT patient outcomes.
Specifically, perceived social support effectiveness above and beyond quantity of support, as
well as the potential benefits of common dyadic coping should be a continued focus of future
research to inform dyadic psychosocial interventions at critical stages of HSCT.
50


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transplant recipients: The 'time trajectory' to recovery over the first year. Bone
Marrow Transplantation, 21(5), 477-486.
Meier, C., Bodenmann, G., Moergeli, H., Peter-Wight, M., Martin, M., Buechi, S., &
Jenewein, J. (2007). Dyadic coping among couples with COPD: A pilot study.
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Mickelson, K. D., Lyons, R. F., Sullivan, M. J., & Coyne, J. C. (2001). Yours, mine, ours:
The relational context of communal coping.
Mosher, C. E., DuHamel, K. N., Rini, C., Corner, G., Lam, J., & Redd, W. H. (2011). Quality
of life concerns and depression among hematopoietic stem cell transplant survivors.
Supportive Care in Cancer, 19(9), 1357-1365.
Mosher, C. E., Redd, W. H., Rini, C. M., Burkhalter, J. E., & DuHamel, K. N. (2009).
Physical, psychological, and social sequelae following hematopoietic stem cell
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management of psychosocial distress. Oncology, 13 (5 A), 113-47.
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Northouse, L. L., Mood, D., Templin, T., Mellon, S., & George, T. (2000). Couples' patterns
of adjustment to colon cancer. Social Science & Medicine, 50(2), 271-284.
Pasquini, M.C., & Wang, Z. (2014). Current uses and outcomes of hematopoietic stem cell
transplantation: 2014 Center for International Blood and Marrow Transplant Research
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Pihet, S., Bodenmann, G., Cina, A., Widme, K., & Shantinath, S (2007). Can prevention of
marital distress improve well being? A 1 year longitudinal study. Clinical
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fellowship-training.htm
Prieto, J. M., Atala, J., Blanch, J., Carreras, E., Rovira, M., Cirera, E., & Gasto, C. (2005).
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Prieto, J. M., Blanch, J., Atala, J., Carreras, E., Rovira, M., Cirera, E., & Gasto, C. (2002).
Psychiatric morbidity and impact on hospital length of stay among hematologic
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20(1), 1907-1917.
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57


Robbins, M. L., Mehl, M. R., Smith, H. L., & Weihs, K. L. (2013). Linguistic indicators of
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22(1), 1501-1508.
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Papadopoulos, E., Moskowitz, C. and Redd, W. (2008). Psychological distress in
long-term survivors of hematopoietic stem cell transplantation. Psycho-Oncology 17,
329-337.
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cancer after surgery. Journal of Social and Clinical Psychology, 23(5), 716-732.
Sherman, A. C., Simonton, S., Latif, U., Spohn, R., & Tricot, G. (2004). Psychosocial
adjustment and quality of life among multiple myeloma patients undergoing
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Syrjala, K. L., Langer, S. L., Abrams, J. R., Storer, B., Sanders, J. E., Flowers, M. E., &
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Transplantation, 48(4), 469-473.
59


APPENDIX A
STUDY RECRUITMENT FLYER CBCI
Patient/Caregiver Autologous Transplant Study Information Sheet
Patient-caregiver relationships,
social support, coping style and psychosocial distress
Why is this study being done?
There is limited research examining the relationship between patients undergoing
autologous hematopoetic stem cell transplants and their married/partnered
caregivers. This study is designed to inform more about patient-caregiver
relationships, social support, coping styles and patient psychosocial distress.
What will I be asked to do if I join this study?
You and your partner will both be asked to fill out a survey before the transplant
about your relationship, social support needs, coping style and your physical and
mental well-being. This survey will take about 45-60 to complete.
If you are a patient at CBCI, you will also fill out a second, shorter survey
approximately one month after transplant. This survey will take about 15-20
minutes to complete.
You may withdraw at any time during the study.
If you would like more information or are interested in participating in this study,
please:
Inform someone on your psychosocial team at CBCI or
Contact: Jessica Geller, M.S.
Phone: 720.754.6429 or
Email: jessica.geller@ucdenver.edu
60


APPENDIX B
STUDY RECRUITMENT FLYER UCH
Patient/Caregiver Autologous Transplant Study Information Sheet
Patient-caregiver relationships,
social support, coping style and psychosocial distress
Why is this study being done?
There is limited research examining the relationship between patients undergoing
autologous hematopoetic stem cell transplants and their married/partnered
caregivers. This study is designed to inform more about patient-caregiver
relationships, social support, coping styles and patient psychosocial distress.
What will I be asked to do if I join this study?
You and your partner will both be asked to fill out a survey before the transplant
about your relationship, social support needs, coping style and your physical and
mental well-being. This survey will take about 45-60 to complete.
If you are a patient at the Hematologic Malignancies and BMT Program at the
University of Colorado Hospital, you will also fill out a second, shorter survey
approximately one month after transplant. This survey will take about 15-20
minutes to complete.
You may withdraw at any time during the study.
If you would like more information or are interested in participating in this study,
please:
Inform someone on your psychosocial team
Contact: Jessica Geller, M.S.
Phone: 303.476.8165 or
Email: jessica.geller@ucdenver.edu
61


APPENDIX C
PATIENT CONSENT FORM CBCI
PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing
Autologous Hematopoietic Stem Cell Transplant (HSCT)
INVESTIGATOR: Dr. Andrea Maikovich-Fong (720-754-4855)
SITE: Colorado Blood Cancer Institute, Presbyterian/St. Lukes Medical
Center/Colorado Blood Cancer Institute
1721 East 19th Avenue, Suite 300
Denver, Colorado 80218
720-754-4800
Introduction
You are being asked to participate in a research study. Please read the information below,
which provides you with information about the study. A member of the research team will
also describe the study to you and can answer questions about anything you dont
understand before you decide whether or not to take part in the study.
Why is this study being done?
There is limited research examining the relationsip between patients undergoing autologous
hematopoetic stem cell transplants and their married/partnered caregivers. This study plans
to learn more about patient-caregiver relationships, social support, and coping styles and
patient psychosocial distress.
Why are you being asked to participate in this study?
You are being asked to participate in this research study because you are 18 years of age or
older and are undergoing an autologous hematopoetic stem cell transplant.
Other people in this study
Up to 70 couples (patients undergoing an autologous transplant and their caregivers) will
be contacted to enroll in this research study.
What happens if I join this study?
If you join the study, you will be asked to fill out two surveys, which will ask some
questions about your general physical and mental well-being. This survey will also have
questions about your relationship with your partner, social support received, and coping
style. This survey will take approximately 45-60 minutes to complete. You will fill it out
within the weeks prior to your transaplant.
You will fill out a second, shorter survey about one month after your transplant that will
take approximately 15-20 minutes to complete. Study participation will only be during
these two time points. You may withdraw at any time during the study
62


What are the possible discomforts or risks?
The study may include risks that are unknown at this time. While in the study, you may
find out about a psychiatric condition that you did not know about before starting the study.
Discomforts you may experience while in this study include emotional distress or
embarrassment when asked to think about your feelings related to your partner. If you are
still a patient at Presbyterian/St. Lukes, you may request to see one of the staff
psychologists or psychology fellows. Otherwise, you will be provided with references for
community providers if you request them or if staff believes they may be helpful to you. If
you choose to utilize these services, you would be responsible for any associated costs.
Some participants may feel burdened by filling out the surveys. You are encouraged to
participate only if you feel that filling out the surveys will not be a burden.
What are the possible benefits of the study?
This study is designed for the researcher to learn more about the patient-caregiver
relationship, social support, coping styles and patient psychosocial distress. This study is
not designed to treat any illness or to improve your health. The potential risks are
mentioned in the Discomforts and Risk Section.
Who is paying for this study?
This research is unfunded.
Will I be paid for being in the study?
You will not be paid to participate in the study.
Will I have to pay for anything?
It will not cost you anything to participate in the study.
Is my participation voluntary?
Taking part in this study is voluntary. You have the right to choose not to take part in this
study. If you choose to take part, you have the right to stop at any time. If you refuse or
decide to withdraw later, you will not lose any benefits or rights to which you are entitled.
If you leave this study, you will still receive your normal medical care.
Can I be removed from this study?
The study doctor may decide to stop your participation without your permission, if the
study doctor thinks that being in the study may cause you harm, or for any other reason.
What happens if I am injured or hurt during the study?
If you have an injury while you are in this study, you should call Andrea Maikovich-Fong,
Ph.D. immediately at 720-754-4855. We will arrange for you to get medical care in the
unlikely event that you incur an injury that is caused by this research. However, you or
your insurance company will have to pay for that care.
Things that must be reported to the authorities:
63


We respect your right to privacy, but there are some things we cannot keep private. If you
give us information about child neglect or child abuse, we have to report this to Social
Services. If you give us information about someone hurting someone else, we have to
report that to the police. If a court orders us to hand over your study records, we have to
hand them over to the court.
Who do I call if I have questions?
The researchers carrying out this study are Andrea Maikovich-Fong, Ph.D. at
Presbyterian/St. Lukes Medical Center and Kristin Kilbourn, Ph.D., M.P.H. at the
University of Colorado Denver. You may ask any questions you have at this time. If you
have questions later, you may call Andrea Maikovich-Fong, Ph.D. at 720-754-4855. You
will also be given a copy of this form to keep.
You may have questions about your rights as someone in this study. You can call Andrea
Maikovich-Fong, Ph.D. with questions or you can also call the HCA-HealthONE
Institutional Review Board at 303-584-2300.
Who will see my research information?
To ensure your privacy and confidentiality, once you have filled out the survey information
the survey will be connected with an identifying number, and your personal information such
as your name and birthdate, will be kept in locked file cabinet at the Colorado Blood Cancer
Institute. We will do everything we can to keep your records private; however, the people
who may see the records that identify you and the consent form signed by you include:
The study researcher and his/her team of researchers
Officials at Presbyterian/St. Lukes Medical Center who are in charge of making
sure that we follow all of the rules for research including the HCA-HealthONE
Institutional Review Board
People at the Colorado Multiple Institutional Review Board (COMIRB)
We might talk about this research study at professional meetings. We might also print the
results of this research study in relevant journals. We will always keep the names of
research participants, like you, confidential.
We will ask you to sign a different form that talks about who can see your research records.
That form is called a HIPAA form. It will give the names of companies and universities
who may see your research records.
This authorization does not expire. However, you may withdraw this authorization for use
and disclosure of your personal health information by providing a written request to the
Investigator. If you withdraw this authorization, the Institution, the Investigator, the
research staff, and the research sponsor will no longer be able to use or disclose your
personal health information from this study, except so far as that they have already relied
on this information to conduct the study.
Agreement to be in this study:
64


By signing below, you are awknowledging that you have read this paper about the study or
it was read to you. By signing below you are stating that you understand the possible risks
and benefits of this study. You also are stating that you know that being in this study is
voluntary. If you choose to be in this study, you will get a copy of this consent form.
Signature:___________________________________ Date:_________________________________
Printed Name:________________________________________________________
I have explained the research to the subject and have answered his/her questions.
Consent Form Explained By:_________________________Date:____________________________
Printed Name:________________________________________________________
Inve sti gator:____________________________________D ate:___________________________
65


APPENDIX D
PATIENT CONSENT FORM CBCI
PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing
Autologous Hematopoietic Stem Cell Transplant (HSCT)
INVESTIGATOR: Dr. Benjamin Brewer (720-848-1611)
SITE: Hematologic Malignancies and BMT Program, University of Colorado Hospital
12700 East 19th Ave, Room 9122
Research Complex 2, Campus Box B170
Aurora, CO 80045
720-848-1611
Introduction
You are being asked to participate in a research study conducted at the Hematologic
Malignancies and BMT Program at the University of Colorado Hospital by Benjamin
Brewer, Psy.D. and Jessica Geller, M.S. from the University of Colorado Denver. Please
read the information below, which provides you with information about the study. A
member of the research team will also describe the study and can answer questions about
anything you dont understand before you decide whether or not to take part in the study.
Why is this study being done?
There is limited research examining the relationsip between patients undergoing autologous
hematopoetic stem cell transplants and their married/partnered caregivers. This study plans
to learn more about patient-caregiver relationships, social support, and coping styles and
patient psychosocial distress.
Why are you being asked to participate in this study?
You are being asked to participate in this research study because you are 18 years of age or
older and are undergoing an autologous hematopoetic stem cell transplant.
Other people in this study
Up to 70 couples (patients undergoing an autologous transplant and their caregivers) will
be contacted to enroll in this research study.
What happens if I join this study?
If you join the study, you will be asked to fill out two surveys, which will ask some
questions about your general physical and mental well-being. This survey will also have
questions about your relationship with your partner, social support received, and coping
style. This survey will take about 45-60 minutes to complete. You will fill it out within the
weeks prior to your transplant.
66


You will fill out a second, shorter survey about one month after your transplant that will
take approximately 15-20 minutes to complete. Study participation will only be during
these two time points. You may withdraw at any time during the study
What are the possible discomforts or risks?
The study may include risks that are unknown at this time. While in the study, you may
find out about a psychiatric condition that you did not know about before starting the study.
If this happens, we will let one of the study team members know immediately, so that you
can speak with them if you have questions, concerns, or need support.
Discomforts you may experience while in this study include emotional distress or
embarrassment when asked to think about your feelings related to your partner. If you are
still a patient at the Hematologic Malignancies and BMT Program at the University of
Colorado Hospital, you may request to see one of the staff psychologists or psychology
fellows. Otherwise, you will be provided with references for community providers if you
request them or if staff believes they may be helpful to you. If you choose to utilize these
services, you would be responsible for any associated costs.
Some participants may feel burdened by filling out the surveys. You are encouraged to
participate only if you feel that filling out the surveys will not be a burden.
What are the possible benefits of the study?
This study is designed for the researcher to learn more about the patient-caregiver
relationship, social support, coping styles and patient psychosocial distress. This study is
not designed to treat any illness or to improve your health. The potential risks are
mentioned in the Discomforts and Risk Section.
Who is paying for this study?
This research is unfunded.
Will I be paid for being in the study?
You will not be paid to participate in the study.
Will I have to pay for anything?
It will not cost you anything to participate in the study.
Is my participation voluntary?
Taking part in this study is voluntary. You have the right to choose not to take part in this
study. If you choose to take part, you have the right to stop at any time. If you refuse or
decide to withdraw later, you will not lose any benefits or rights to which you are entitled.
If you leave this study, you will still receive your normal medical care.
Can I be removed from this study?
The study doctor may decide to stop your participation without your permission, if the
study doctor thinks that being in the study may cause you harm, or for any other reason.
67


What happens if I am injured or hurt during the study?
If you have an injury while you are in this study, you should call Benjamin Brewer, Psy.D.
immediately at at 720-848-1611. We will arrange for you to get medical care in the
unlikely event that you incur an injury that is caused by this research. However, you or
your insurance company will have to pay for that care.
Things that must be reported to the authorities:
We respect your right to privacy, but there are some things we cannot keep private. If you
give us information about child neglect or child abuse, we have to report this to Social
Services. If you give us information about someone hurting someone else, we have to
report that to the police. If a court orders us to hand over your study records, we have to
hand them over to the court. If you let us know about thoughts of harming yourself, we will
let one of the study team members know immediately.
Who do I call if I have questions?
The researchers carrying out this study are Benjamin Brewer, Psy.D. at the Hematologic
Malignancies and BMT Program at the University of Colorado Hospital, Jessica Geller,
M.S., and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may
ask any questions you have at this time. If you have questions later, you may call Jessica
Geller, M.S. at 303-476-8165. You will also be given a copy of this form to keep.
You may have questions about your rights as someone in this study. You can call Jessica
Geller, M.S. with questions or you can also call the HCA-HealthONE Institutional Review
Board at 303-584-2300.
Who will see my research information?
To ensure your privacy and confidentiality, once you have filled out the survey information
the survey will be connected with an identifying number, and your personal information such
as your name and birthdate, will be kept in locked file cabinet at the University of Colorado
Anschutz Medical Campus or the Colorado Blood Cancer Institute. We will do everything
we can to keep your records private; however, the people who may see the records that
identify you and the consent form signed by you include:
The study researchers and his/her team of researchers
Officials at Presbyterian/St. Lukes Medical Center who are in charge of
making sure that we follow all of the rules for research including the HCA-
HealthONE Institutional Review Board
People at the Colorado Multiple Institutional Review Board (COMIRB)
We might talk about this research study at professional meetings. We might also print the
results of this research study in relevant journals. We will always keep the names of
research participants, like you, confidential. We will ask you to sign a different form that
talks about who can see your research records. That form is called a HIPAA form. It will
give the names of companies and universities who may see your research records.
This authorization does not expire. However, you may withdraw this authorization for use
and disclosure of your personal health information by providing a written request to the
68


Investigator. If you withdraw this authorization, the Institution, the Investigator, the
research staff, and the research sponsor will no longer be able to use or disclose your
personal health information from this study, except so far as that they have already relied
on this information to conduct the study.
Agreement to be in this study:
By signing below, you are awknowledging that you have read this paper about the study or
it was read to you. By signing below you are stating that you understand the possible risks
and benefits of this study. You also are stating that you know that being in this study is
voluntary and that any questions you had have been answered to your satisfaction. If you
choose to be in this study, you will get a copy of this consent form.
Signature:___________________________________Date:_____________________________
Printed Name:_______________________________________________________
I have explained the research to the subject and have answered his/her questions.
Consent Form Explained By:_________________________Date:__________________________
Printed Name:_______________________________________________________
Inve sti gator:____________________________________Date:__________________________
69


APPENDIX E
CAREGIVER CONSENT FORM CBCI
PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing
Autologous Hematopoietic Stem Cell Transplant (HSCT)
INVESTIGATOR: Dr. Andrea Maikovich-Fong (720-754-4855)
SITE: Colorado Blood Cancer Institute, Presbyterian/St. Lukes Medical
Center/Colorado Blood Cancer Institute
1721 East 19th Avenue, Suite 300
Denver, Colorado 80218
720-754-4800
Introduction
You are being asked to participate in a research study. Please read the information below,
which provides you with information about the study. A member of the research team will
also describe the study to you and can answer questions about anything you dont
understand before you decide whether or not to take part in the study.
Why is this study being done?
There is limited research examining the relationsip between patients undergoing autologous
hematopoetic stem cell transplants and their married/partnered caregivers. This study plans
to learn more about patient-caregiver relationships, social support, coping styles, and
patient psychosocial distress.
Why are you being asked to participate in this study?
You are being asked to participate in this research study because you are 18 years of age or
older and are the married/partnered caregiver of a patient undergoing an autologous
hematopoetic stem cell transplant.
Other people in this study
Up to 70 couples (patients undergoing an autologous transplant and their married/partnered
caregivers) will be contacted to enroll in this research study.
What happens if I join this study?
If you join the study, you will be asked to fill out a survey, which will ask you some
questions about your general physical and mental well-being. This survey will also have
questions about your relationship with your partner, social support you provide and your
coping style. This survey will take approximately 45-60 minutes to complete. You will fill
it out in the weeks prior to your partners transplant. Study participation will only be during
this time point. You may withdraw at any time during the study.
What are the possible discomforts or risks?
70


The study may include risks that are unknown at this time. While in the study, you may
find out about a psychiatric condition that you did not know about before starting the study.
Discomforts you may experience while in this study include emotional distress or
embarrassment when asked to think about your feelings related to your partner. If your
partner is still a patient at Presbyterian/St. Lukes, you may request to see one of the staff
psychologists or psychology fellows. Otherwise, you will be provided with references for
community providers if you request them or if staff believes they may be helpful to you. If
you choose to utilize these services, you would be responsible for any associated costs.
Some participants may feel burdened by filling out the surveys. You are encouraged to
participate only if you feel that filling out the surveys will not be a burden.
What are the possible benefits of the study?
This study is designed for the researcher to learn more about the patient-caregiver
relationship, social support, coping styles and patient distress. This study is not designed to
treat any illness or to improve your health. The potential risks are mentioned in the
Discomforts and Risk Section.
Who is paying for this study?
This research is unfunded.
Will I be paid for being in the study?
You will not be paid to participate in the study.
Will I have to pay for anything?
It will not cost you anything to participate in the study.
Is my participation voluntary?
Taking part in this study is voluntary. You have the right to choose not to take part in this
study. If you choose to take part, you have the right to stop at any time. If you refuse or
decide to withdraw later, you will not lose any benefits or rights to which you are entitled.
If you leave this study, your partner will still receive his/her normal medical care.
Can I be removed from this study?
The study doctor may decide to stop you and your partners participation without your
permission, if the study doctor thinks that being in the study may cause either of you harm,
or for any other reason.
What happens if I am injured or hurt during the study?
If you have an injury while you are in this study, you should call Andrea Maikovich-Fong,
Ph.D. immediately at 720-754-4855. We will arrange for you to get medical care in the
unlikely event that you incur an injury that is caused by this research. However, you or
your insurance company will have to pay for that care.
Things that must be reported to the authorities:
71


We respect your right to privacy, but there are some things we cannot keep private. If you
give us information about child neglect or child abuse, we have to report this to Social
Services. If you give us information about someone hurting someone else, we have to
report that to the police. If a court orders us to hand over your study records, we have to
hand them over to the court.
Who do I call if I have questions?
The researchers carrying out this study are Andrea Maikovich-Fong, Ph.D. at
Presbyterian/St. Lukes Medical Center and Kristin Kilbourn, Ph.D., M.P.H. at the
University of Colorado Denver. You may ask any questions you have at this time. If you
have questions later, you may call Andrea Maikovich-Fong, Ph.D. at 720-754-4855. You
will also be given a copy of this form to keep.
You may have questions about your rights as someone in this study. You can call Andrea
Maikovich-Fong, Ph.D. with questions or you can also call the HCA-HealthONE
Institutional Review Board at 303-584-2300.
Who will see my research information?
To ensure your privacy and confidentiality, once you have filled out the survey information
the survey will be connected with an identifying number, and your personal information such
as your name and birthdate, will be kept in locked file cabinet at the Colorado Blood Cancer
Institute. We will do everything we can to keep your records private; however, the people
who may see the records that identify you and the consent form signed by you include:
The study researcher and his/her team of researchers
Officials at Presbyterian/St. Lukes Medical Center who are in charge of making
sure that we follow all of the rules for research including the HCA-HealthONE
Institutional Review Board
People at the Colorado Multiple Institutional Review Board (COMIRB)
We might talk about this research study at professional meetings. We might also print the
results of this research study in relevant journals. We will always keep the names of
research participants, like you, confidential.
We will ask you to sign a different form that talks about who can see your research records.
That form is called a HIPAA form. It will give the names of companies and universities
who may see your research records.
This authorization does not expire. However, you may withdraw this authorization for use
and disclosure of your personal health information by providing a written request to the
Investigator. If you withdraw this authorization, the Institution, the Investigator, the
research staff, and the research sponsor will no longer be able to use or disclose your
personal health information from this study, except so far as that they have already relied
on this information to conduct the study.
Agreement to be in this study:
72


By signing below, you are awknowledging that you have read this paper about the study or
it was read to you. By signing below you are stating that you understand the possible risks
and benefits of this study. You also are stating that you know that being in this study is
voluntary. If you choose to be in this study, you will get a copy of this consent form.
Signature:___________________________________ Date:_________________________________
Printed Name:________________________________________________________
I have explained the research to the subject and have answered his/her questions.
Consent Form Explained By:_________________________Date:______________________________
Printed Name:________________________________________________________
Inve sti gator:____________________________________D ate:_____________________________
73


APPENDIX F
CAREGIVER CONSENT FORM UCH
PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing
Autologous Hematopoietic Stem Cell Transplant (HSCT)
INVESTIGATOR: Dr. Benjamin Brewer (720-848-1611)
SITE: Hematologic Malignancies and BMT Program at the University of Colorado Hospital
Research Complex 2, Campus Box B170
Aurora, CO 80045
720-848-1611
Introduction
You are being asked to participate in a research study conducted at the Hematologic
Malignancies and BMT Program at the University of Colorado Hospital by Benjamin
Brewer, Psy.D. and Jessica Geller, M.S. from the University of Colorado Denver. Please
read the information below, which provides you with information about the study. A
member of the research team will also describe the study to you and can answer questions
about anything you dont understand before you decide whether or not to take part in the
study.
Why is this study being done?
There is limited research examining the relationsip between patients undergoing autologous
hematopoetic stem cell transplants and their married/partnered caregivers. This study plans
to learn more about patient-caregiver relationships, social support, coping styles, and
patient psychosocial distress.
Why are you being asked to participate in this study?
You are being asked to participate in this research study because you are 18 years of age or
older and are the married/partnered caregiver of a patient undergoing an autologous
hematopoetic stem cell transplant.
Other people in this study
Up to 70 couples (patients undergoing an autologous transplant and their married/partnered
caregivers) will be contacted to enroll in this research study.
What happens if I join this study?
If you join the study, you will be asked to fill out a survey, which will ask you some
questions about your general physical and mental well-being. This survey will also have
questions about your relationship with your partner, social support you provide and your
coping style. This survey will take about 45-60 minutes to complete. You will fill it out in
the weeks prior to your partners transplant. Study participation will only be during this
time point. You may withdraw at any time during the study.
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What are the possible discomforts or risks?
The study may include risks that are unknown at this time. While in the study, you may
find out about a psychiatric condition that you did not know about before starting the study.
If this happens, we will let one of the study team members know immediately, so that you
can speak with them if you have questions, concerns, or need support.
Discomforts you may experience while in this study include emotional distress or
embarrassment when asked to think about your feelings related to your partner. If your
partner is still a patient at the Hematologic Malignancies and BMT Program at the
University of Colorado Hospital, you may request to see one of the staff psychologists or
psychology fellows. Otherwise, you will be provided with references for community
providers if you request them or if staff believes they may be helpful to you. If you choose
to utilize these services, you would be responsible for any associated costs.
Some participants may feel burdened by filling out the surveys. You are encouraged to
participate only if you feel that filling out the surveys will not be a burden.
What are the possible benefits of the study?
This study is designed for the researcher to learn more about the patient-caregiver
relationship, social support, coping styles and patient distress. This study is not designed to
treat any illness or to improve your health. The potential risks are mentioned in the
Discomforts and Risk Section.
Who is paying for this study?
This research is unfunded.
Will I be paid for being in the study?
You will not be paid to participate in the study.
Will I have to pay for anything?
It will not cost you anything to participate in the study.
Is my participation voluntary?
Taking part in this study is voluntary. You have the right to choose not to take part in this
study. If you choose to take part, you have the right to stop at any time. If you refuse or
decide to withdraw later, you will not lose any benefits or rights to which you are entitled.
If you leave this study, your partner will still receive his/her normal medical care.
Can I be removed from this study?
The study doctor may decide to stop you and your partners participation without your
permission, if the study doctor thinks that being in the study may cause either of you harm,
or for any other reason.
What happens if I am injured or hurt during the study?
If you have an injury while you are in this study, you should call Benjamin Brewer, Psy.D.
immediately at 720-848-1611. We will arrange for you to get medical care in the unlikely
75


event that you incur an injury that is caused by this research. However, you or your
insurance company will have to pay for that care.
Things that must be reported to the authorities:
We respect your right to privacy, but there are some things we cannot keep private. If you
give us information about child neglect or child abuse, we have to report this to Social
Services. If you give us information about someone hurting someone else, we have to
report that to the police. If a court orders us to hand over your study records, we have to
hand them over to the court. If you let us know about thoughts of harming yourself, we will
let one of the study team members know immediately.
Who do I call if I have questions?
The researchers carrying out this study are Benjamin Brewer, Psy.D. at the Hematologic
Malignancies and BMT Program at the University of Colorado Hospital, Jessica Geller,
M.S., and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may
ask any questions you have at this time. If you have questions later, you may call Jessica
Geller, M.S. at 303-476-8165. You will also be given a copy of this form to keep.
You may have questions about your rights as someone in this study. You can call Jessica
Geller, M.S. with questions or you can also call the HCA-HealthONE Institutional Review
Board at 303-584-2300.
Who will see my research information?
To ensure your privacy and confidentiality, once you have filled out the survey information
the survey will be connected with an identifying number, and your personal information such
as your name and birthdate, will be kept in locked file cabinet at the University of Colorado
Anschutz Medical Campus or the Colorado Blood Cancer Institute. We will do everything
we can to keep your records private; however, the people who may see the records that
identify you and the consent form signed by you include:
The study researcher and his/her team of researchers
Officials at Presbyterian/St. Lukes Medical Center who are in charge of
making sure that we follow all of the rules for research including the HCA-
HealthONE Institutional Review Board
People at the Colorado Multiple Institutional Review Board (COMIRB)
We might talk about this research study at professional meetings. We might also print the
results of this research study in relevant journals. We will always keep the names of
research participants, like you, confidential. We will ask you to sign a different form that
talks about who can see your research records. That form is called a HIPAA form. It will
give the names of companies and universities who may see your research records.
This authorization does not expire. However, you may withdraw this authorization for use
and disclosure of your personal health information by providing a written request to the
Investigator. If you withdraw this authorization, the Institution, the Investigator, the
research staff, and the research sponsor will no longer be able to use or disclose your
76


personal health information from this study, except so far as that they have already relied
on this information to conduct the study.
Agreement to be in this study:
By signing below, you are awknowledging that you have read this paper about the study or
it was read to you. By signing below you are stating that you understand the possible risks
and benefits of this study. You also are stating that you know that being in this study is
voluntary and that any questions you had have been answered to your satisfaction. If you
choose to be in this study, you will get a copy of this consent form.
Signature:__________________________________Date:_____________________________
Printed Name:_______________________________________________________
I have explained the research to the subject and have answered his/her questions.
Consent Form Explained By:________________________Date:__________________________
Printed Name:_______________________________________________________
Investigator:______________________________________Date:___________________
77


APPENDIX G
PATIENT PRE-TRANSPLANT SURVEY
Todays Date:___/____/____________
Your Name:__________________________________________
Your Date of Birth:__/____/___________
This cover sheet will be removed to protect your privacy.
Thank you for taking the time to complete this survey!
Researcher Only
Study ID:__________
Dyad ID:___________
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_________________________Patient Pre-transplant Survey Packet__________________________
General Instructions
Please take your time and answer all questions in this survey.
There are no right or wrong answers. Please select the answer that fits best for you.
For some questions, you may have to write out an answer. Please write your answer
carefully so we can read it.
If you change your mind, draw an X through your original answer, and select a new
answer.
The responses you provide in this survey will not be shared with your spouse/partner.
Your responses will also not impact the medical care that you receive.
I. Demographics
Remember, there are no right or wrong answers. Please select the answer that fits best for
you.
Put a checkmark next to your answer.
1. What is your gender?
a. _____Female
b. ____Male
c. ____Transgender
2. Which of the following best describes your racial/ethnic background?
a. _____White, not of Hispanic origin
b. ____Black or African-American, not of Hispanic origin
c. ____Hispanic
d. ____American Indian/Alaskan Native
e. ____Asian/Pacific Islander
f. ____Multi-Ethnic
e.______Other (please specify)_________________________
3. What is your current relationship status?
a. _____Married
b. ____Committed relationship
c. ____Other (please specify)_________________________
4. How long have you been in a relationship with your partner?
__________Years_________Months
5. Do you have children?
a. Yes
If yes, how many?______What are their ages?___Do they live with
you?____
79


b. ______No
6. What is the highest level of education you have completed?
a. _____Less than high school
b. _____Some high school
c. _____High school graduate
d. _____Some college
e. _____College graduate
f. _____Graduate education
7. What is your current employment status?
a. _____Employed full time (including self-employed)
b. _____Employed part-time (including self employed)
c. _____Full-time homemaker
d. _____Full-time or Part-time volunteer
e. _____Full time student
f. _____On temporary medical leave/disability
g. _____Retired
h. _____Linemployed
i. _____Permanently unable to work
8. What is your occupation? __________________________________
9. Approximately what is your current annual household income?
a. $0 $25 i,000
b. $25,001 - $50,000
c. $50,001 - $75,000
d. $75,001 - $100,000
e. $100,000+
II. General Health and Mental Well-Being
10. In general, would you say your health is:
a. _____Excellent
b. ____Very Good
c. ____Good
d. ____Fair
e. ____Poor
11. How severe do you feel your diagnosis is?
a. _____Very severe
b. ____Somewhat severe
c. ____Mildly severe
d. ____Not at all severe
12. Do you have any other chronic conditions or illnesses at this time?
80


a. _____Yes If yes, please
specify________________________________________________
b. _______No
13. If you have another chronic condition or illness, how much does it interfere with your
day-to-day activities?
a. _____Not at all
b. _____A little
c. _____A great deal
14. Please check if you have any of the following diagnoses?
a. _____Depression
b. _____Bipolar disorder
c. _____Anxiety
d. _____Schizophrenia
e. _____Eating disorder
f. _____ADHD
15. If you checked any of the diagnoses listed above, are you currently on any medications
for them?
a. ______Yes If yes, which
medication(s)_____________________________________________
b. _____No
16. If you checked any of the diagnoses listed above, are you currently seeing a counselor or
therapist for them?
a. ______Yes If yes, how
often_____________________________________________________
b. _____No
17. Are you and your partner currently in couples counseling?
a. _____Yes If yes, how often do you go?________________________________________
b. _____No
III. Caregiving
18. Caregiving can be defined as the act of caring for someone who is physically ill. Often,
caregivers have many different roles, including helping or supporting loved ones with
physical, emotional, and practical needs. Do you feel that your partner has served as a
caregiver to you?
a. _____Yes If yes, approximately how long has your partner been helping to serve
as a caregiver for you?____________________________Years_Months
b. No
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Partner Responses to Cancer Inventory
INSTRUCTIONS: The purpose of this questionnaire is to find out how your
spouse/partner has responded in helping you deal with the cancer experience. You may
encounter thoughts, feelings, or situations related to having cancer. Please think about
thoughts, feelings, or situations you have encountered in the past month related to your
own cancer experience. The statements below are possible responses your spouse/partner
may have had. Please rate each item as to HOW OFTEN your partner has responded in
these ways DURING THE PAST MONTH
Please note that Not Applicable is NOT a response option. Each event either did or did
not occur, to varying degrees. If you feel that a response does not apply to your situation
because your partner did not respond in this way or because you were not feeling ill,
please mark 1 for Never responded this way.
The ratings are as follows:
1 = Never responded this way 2 = Rarely responded this way
3 = Sometimes responded this way 4 = Often responded this way
DURING THE PAST MONTH, WHEN DEALING WITH THE CANCER EXPERIENCE,
MY. .
Spouse/Partner
_______1. Joked and tried to cheer me up.
_______2. Asked me how I was feeling.
_______3. Let me know that they would always be around if I needed assistance.
_______4. Comforted me by showing me some physical affection.
_______5. Did household chores or errands I found difficult to do.
_______6. Handled or cleared up money matters.
_______7. Provided me with transportation.
_______8. Pitched in to do something that needed to be done
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REVISED DYADIC ADJUSTMENT SCALE (RDAS)
Most persons have disagreements in their relationships. Please indicate below the approximate extent of
agreement or disagreement between you and your partner for each item on the following list.
Always Agree Almost Always Agree Occa- sionally Agree Fre- quently Disagree Almost Always Disagree Always Disagree
1. Religious matters 5 4 3 2 1 0
2. Demonstrations of 5 affection 4 3 2 1 0
3. Making major decisions 5 4 3 2 1 0
4. Sex relations 5 4 3 2 1 0
5. Conventionality (correct 5 or proper behavior) 4 3 2 1 0
6. Career decisions 5 4 3 2 1 0
All the time Most of the time More often than not Occa- sionally Rarely Never
7. How often do you discuss or have you considered 0 divorce, separation, or terminating your relationship 1 2 3 4 5
8. How often do you and 0 your partner quarrel? 1 2 3 4 5
9. Do you ever regret that 0 you married (or lived together)? 1 2 3 4 5
10. How often do you and 0 your mate get on each others nerves? 1 2 3 4 5
All the time Most of the time More often than not Occa- sionally Never
11. Do you and your mate engage in outside interests 4 together? 3 2 1 0
How often would you say the following events occur between you and your mate? Less than Once or Once or once a twice a twice a Never month month week Once a day More often
12. Have a stimulating 0 exchange of ideas 1 2 3 4 5
13. Work together on a 0 project 1 2 3 4 5
14. Calmly discuss 0 something 1 2 3 4 5
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SOCIAL SUPPORT EFFECTIVENESS-QUESTIONNAIRE (SSE-Q)
______________________________Supportive Behaviors___________________________________
Instructions:
In our daily lives, we sometimes need help or support from people who are close to us. The
following questions ask about help or support you may have received from your
spouse/partner in the past month and what you thought of it.
You will be asked about three different types of help or support: 1) Help with tasks or
responsibilities, 2) Advice or information, and 3) Emotional support.
HELP WITH TASKS AND RESPONSIBILITIES in the past month
1. Sometimes we need help with tasks and responsibilities such as household chores, running
errands, or childcare. When your spouse/partner attempted to help you with your tasks and
responsibilities, how good was the match between the amount of help provided and the
amount you wanted?
Very Poor DPoor DFair DGood
(it was far too little (it was too little or (it was somewhat (it was close to being
or too much help) too little or somewhat the right amount of
far too much help) too much help) help)
2. To what extent did you wish your spouses/partners help had been different somehowtor
instance, a different type of help, or offered in a different way or at a different time?
Not at all DA little bit DModerately DQuite a bit Extremely
3. When help with tasks and responsibilities is provided skillfully, it makes you feel less
burdened and you dont feel bad for needing it. When your spouse/partner attempted to help
you with tasks and responsibilities, to what extent was his/her help provided skillfully?
Not at all OA little bit DModerately DQuite a bit Extremely
4. When you needed your spouses/partners help with tasks and responsibilities, how often
was it difficult to get?
Never ORarely Sometimes OOften OAlways
5. How often did your spouse/partner offer to help you with tasks and responsibilities without
you having to ask?
Never ORarely Sometimes OOften OAlways
Excellent
(it was exactly the
right amount of help)
ADVICE OR INFORMATION in the past month
6. Sometimes we need advice or informationfor instance, on how to get something done or
how to handle a problem. When your spouse/partner attempted to give you advice or
information, how good was the match between the amount he/she provided and the amount
you wanted?
Very Poor
(it was far too little
or
far too much help)
Poor
(it was too little or
too much help)
Fair
Good Excellent
(it was somewhat
too little or somewhat
too much help)
(it was close to being
the right amount of
help)
(it was exactly the
right amount of help)
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7. To what extent did you wish your spouses/partners advice or information had been different
somehowfor instance, a different type of help, or offered in a different way or at a different
time?
Not at all DA little bit Moderately DQuite a bit Extremely
8. When advice or information is provided skillfully, it is useful and you dont feel bad for
needing it. When your spouse/partner attempted to give you advice or information, to what
extent was it provided skillfully?
Not at all OA little bit Moderately Quite a bit Extremely
9. When you needed advice or information from your spouse/partner, how often was it difficult
to get?
Never ORarely Sometimes nOften OAlways
10. How often did your spouse/partner offer helpful advice or information without you having to
ask for it?
Never ORarely Sometimes nOften OAlways
EMOTIONAL SUPPORT in the past month
11. Sometimes we need emotional supportsomeone to listen to and understand our feelings
or to show us affection and concern. When your spouse/partner attempted to give you
emotional support, how good was the match between the amount of support he/she
provided and the amount you wanted?
Very Poor DPoor DFair DGood Excellent
(it was far too little (it was too little or (it was somewhat (it was close to being (it was exactly the
or too much help) too little or somewhat the right amount of right amount of help)
far too much help) too much help) help)
12. To what extent did you wish your spouses/partners emotional support had been different
somehowfor instance, a different type of support, or offered in a different way or at a
different time?
Not at all OA little bit Moderately OQuite a bit Extremely
13. When emotional support is provided skillfully, it makes you feel loved and cared for and you
dont feel bad for needing support. When your spouse/partner attempted to give you
emotional support, to what extent was the support provided skillfully?
Not at all OA little bit Moderately Quite a bit Extremely
14. When you needed emotional support from your spouse/partner, how often was it difficult to
get?
Never ORarely Sometimes Often OAlways
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15. How often did your spouse/partner offer emotional support without you having to ask for
it?
Never DRarely Sometimes DOften DAIways
When you received help or support from your spouse/partner in the past month,
did it ever make you feel any of these things?:
16. Disrespected/I nsulted Yes No
17. Helpless Yes No
18. Incompetent Yes No
19. Guilty Yes No
20. Ashamed/Embarrassed Yes No
21. Stupid/Unintelligent Yes No
22. Indebted, like you owe something in return Yes No
23. Frustrated Yes No
24. Angry Yes No
25. Irritated Yes No
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Dyadic Coping Inventory (DCI)
This scale is designed to measure how you and your partner cope with stress. Please indicate the first
response that you feel is appropriate. Please be as honest as possible.
Please response to any item by marking the appropriate case, which is fitting to your personal situation.
There are no false answers.
How you communicate your stress to your partner? never/ very rarely rarely some- times often very often
1. I let my partner know that I appreciate his/her practical support, advice, or help.
2. I ask my partner to do things for me when I have too much to do.
3. I show my partner through my behaviour when I am not doing well or when I have problems.
4. I tell my partner openly how I feel and that I would appreciate his/her support.
What your partner does when you are feeling stressed?
5. My partner shows empathy and understanding to me.
6. My partner expresses that he/she is on my side.
7. My partner blames me for not coping well enough with stress.
8. My partner helps me to see stressful situations in a different light.
9. My partner listens to me and gives me the opportunity to communicate what really bothers me.
10. My partner does not take my stress seriously.
11. My partner provides support, but does so unwillingly and unmotivated.
12. My partner takes on things that I normally do in order to help me out.
13. My partner helps me analyze the situation so that I can better face the problem.
14. When I am too busy, my partner helps me out.
15. When I am stressed, my partner tends to withdraw.
How your partner communicates when he/she is feeling stressed?
16. My partner lets me know that he/she appreciates my practical support, advice, or help.
17. My partner asks me to do things for him/her when he has too much to do.
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How jour partner communicates when he/she is feeling
stressed?
18. My partner shows me through his/her behaviour that he/she is not doing well or when he/she has problems.
19. My partner tells me openly how he/she feels and that he/she would appreciate my support.
What you do when your partner makes know his/her stress? never/ very rarely rarely some- times often very often
20. I show empathy and understanding to my partner.
21. I express to my partner that I am on his/her side.
22. I blame my partner for not coping well enough with stress.
23. I tell my partner that his/her stress is not that bad and help him/her to see the situation in a different light.
24. I listen to my partner and give him/her space and time to communicate what really bothers him/her.
25. I do not take my partners stress seriously.
26. When my partner is stressed I tend to withdraw.
27. I provide support, but does so unwillingly and unmotivated because I think that he/she should cope with his/her problems on his/her own.
28. I take on things that my partner would normally do in order to help him/her out.
29. I try to analyze the situation together with my partner in an objective manner and help him/her to understand and change the problem.
30. When my partner feels he/she has too much to do, I help
him/her out.
What you and your partner do when you are both feeling
stressed?
31. We try to cope with the problem together and search for ascertained solutions.
32. We engage in a serious discussion about the problem and think through what has to be done.
33. We help one another to put the problem in perspective and see it in a new light.
34. We help each other relax with such things like massage, taking a bath together, or listening to music together.
35. We are affectionate to each other, make love and try that way to cope with stress.
For #35: Even if you have restrictions now, answer this question regarding how you generally cope.
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How you evaluate your coping as a couple?
36. I am satisfied with the support I receive from my partner and
the way we deal with stress together.
37. I am satisfied with the support I receive from my partner and !
find as a couple, the way we deal with stress together is
effective.
VII. Psychosocial Distress
Below is list of problems people sometimes have. Read each one carefully and circle the
number of the response that best describes how much that problem has distressed or bothered
you during the past week.
A
Not at little Moder- Quite a Extre-
All Bit ately Bit mely
1. Faintness or dizziness. O o O O O
2. Feeling no interest in things. O o o o o
3. Nervousness or shakiness. o o o o o
4. Pains in heart or chest. o o o o o
5. Feeling lonely. o o o o o
6. Feeling tense or keyed up. o o o o o
7. Nausea or upset stomach. o o o o o
8. Feeling blue. o o o o o
9. Suddenly scared for no reason. o o o o o
10. Trouble getting your breath. o o o o o
11. Feelings of worthlessness. o o o o o
12. Spells of terror or panic. o o o o o
13. Numbness or tingling in parts of your body. o o o o o
14. Feeling hopeless about the future. o o o o o
15. Feeling so restless you couldnt sit still. o o o o o
16. Feeling weak in parts of your body. o o o o o
17. Thoughts of ending your life. o o o o o
18. Feeling fearful. o o o o o
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DYADIC PREDICTORS OF PSYCHOSOCIAL DISTRESS IN PATIENTS UNDERGOING AUTOLOGOUS HEMATOPOIETIC STEM CELL TRANSPLANT (HSCT) by JESSICA B. GELLER B.A. University of Oregon, 2003 M. S ., Tufts University School of Medicine, 2010 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Doctor o f Philosophy Clinical Health Psychology 201 6

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ii This thesis for the Doctor of Philosophy degree by Jessica B. Geller has been approved for the Clinical Health Psychology Program by Krista Ranby Chair Kristin Kilbourn, Advisor Andrea Maikovich Fong Teri Simoneau Edward Dill April 29 201 6

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iii Geller Jessica B. (Ph.D. Clinical Health Psychology ) Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous Hematopoietic Stem Cell Transplant (HSCT) Thesis directed by Associate Professor, Kristin Kilbourn ABSTRACT Hematopoietic stem cell transplantation (HSCT) is a medically and psychologically taxing procedure for patients and their caregivers. C ouples in which one partner is undergoing HSCT are faced with navigating multiple life changes and dyadic psychosocial stressors Although autologous HSCT is generally lower risk and with fewer complications autologous HSCT patients experience similar, if not greater, rates of distress, depression, and anxiety than allogeneic HSCT pati ents To date, there is limited research on autologous HSCT patients and partnered dyads in HSCT. The primary goal of this longitudinal study was to investigate if unique pre transplant characteristics of the partnered dyad were predictive of and protectiv e against post transplant patient psychosocial distress. This study included 48 dyads mean age 61.69 ( SD = 8.65) inclusive of primarily male patients (66.7%) diagnosed with Multiple Myeloma (52.1%), with low disease risk (63.8%), and low psychosocial risk (91.4%) Dyads complete d pre transplant survey s assessing relationship satisfaction ( Revised Dyadic Adjustment Scale ) quantity of social support (Partner Responses to Cancer Inventory), social support effectiveness (Social Support Effectiveness Questionnaire ) and common dyadic coping (Dyadic Coping Inventory), with patients also answering questions assessing psychological distress (Brief Symptom Inventory 18), transplant specific distress (Impact of Events Scale Revised), and depression (Center f or Epidemiological Studies Depression Scale ) Patients complete d a survey approximately one month post transplant reassessing each measure of psychosocial distress Using couples as

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iv the unit of analysis, results revealed relationship satisfaction was not a significant predictor of post transplant patient psychosocial distress. Higher caregiver and patient perceived social support effectiveness were significant predictors of lower post transplant patient depression. Furthermore, patient perception of support effectiveness was predictive of psychological distress and depression above and beyond both caregiver perception of support effectiveness and perceived quantity of time of support p rovided. Lastly, patients with higher common dyadic coping had lower post transplant, transplant specific distress. C linical implications include informing potential ways to address or prevent psychosocial distress through focused dyadic interventions to e nhance perceived support effectiveness and promot e common dyadic coping early in treatment Future research should further examine the interrelatedness between th e overarching constructs in this study (relationship satisfaction, social support effectiveness, and common dyadic coping) to more fully understand their associations and impact on HSCT patient psychosocial distress The form and content of this abstract are approved. I recommend its publica tion. Approved: Kristin M. Kilbourn

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v I would like to dedicate this dissertation to my grandmother Betty Geller (Nana). Nana is 95 years old and has never stopped learning She is the wise st most resilient, determined and loving person I know. I am forever grateful for the support she provided throughout this process and beyond

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vi ACKNOWLEDGMENTS I would like to thank several notable faculty and staff without which t his st udy would not have been possible First, I would like to thank my advisor Dr. Kristin Kilbourn for her consistent support, dedicated mentorship, guidance, and contributions at each stage through completion of this study I would also like to thank my dissertation chair, Dr. Krista Ranby, who was instrumental in the initial exploration of dyadic coping and who provided dedicated time and mentorship surrounding conducting study analyses with dyadic data, and reviewing th is d ocument I would like to thank Dr. Andrea Maikovich Fong Dr. Teri Simoneau and Dr. Dawn Speckhart for their key contributions in study development and implementation utilizing their extensive experience in psychosocial oncology and HSCT S pecific ally I would like to further thank Dr. Andrea Maikovich Fong for her significant time commitment and dedication to the recruitment and enrollment of participants at CBCI despite an abundance of staff turnover and organizational changes In addition, this project would not have been possible w ithout the contribution of the CBCI psychosocial team ( Kristi Johnson LCSW Janet Spradley, LCSW, Dr. Elissa Kolva, Dr. Darryl Etter, Dr. Jessica Ketterer and Rebekka h Erks LCSW ) who assisst ed with recruitment and enrollment Furthermore, R ory Young, Jamie Sidle and Penny Odem aided in obtaining necessary patient medical data I would like to thank Dr. Benjamin Brewer from UCH for participating as a secondary recruitment site, for his assistance getting this site up and running quickly and for his recruitment efforts. Furthermore I am grateful to Dr. Elissa Kolva, Dr. Tanisha Joshi and Lacey Clement M.A. for their dedica ted recruitment and enrollment efforts at UCH Dr. Kolva has additionally been a significant mentor and source of unwavering support throughout the entire dissertation process. I would like to thank my mentors at Yale

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vii University, Department of Psychiatry including Dr. Dwain Fehon Dr. Michael Hoge, Dr. Kelly DeMarti ni, and Dr. Kathi Croce, who provided ongoing support and time to allow for the completion of my dissertation while on my pre doctoral internship. Furthermore, I would like to thank Robert Geller, Jacqueline Hill, Irinna Papangeli, Lindsay Miller, Erin Markel, and Mark Hibl for their unwavering encouragement throughout this process Finally I would like to thank my faithful dissertation writing group member, Heidi Geller.

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viii TABLE OF CO NTENTS CHAPTER I. INTRODUCTION ... ............ 1 Background and Significane ................................ ................................ ................... 1 Psychosocial Distress in HSCT ................................ ................................ .............. 2 Partnered Dyads in Oncology ................................ ................................ ................. 4 Dyadic Adjustment and Relationship Satisfaction in HSCT ................................ .. 5 Social Support in HSCT ................................ ................................ .......................... 7 Dyadic Coping in HSCT ................................ ................................ ......................... 9 Contributions to the Literature ................................ ................................ .............. 1 1 Specific Aims and Hypotheses ................................ ................................ ............. 1 2 Conceptual Model ................................ ................................ ................................ 1 3 II. METHOD ... .. 1 4 Study Setting ................................ ................................ ................................ ......... 1 4 Recruitment and Enrollment Procedures ................................ .............................. 1 4 Data Collection Procedures ................................ ................................ ................... 1 4 Recruitment Accrual and Attrition ................................ ................................ ........ 1 5 Participants ................................ ................................ ................................ ............ 1 7 Measures ................................ ................................ ................................ .............. 2 0 Data Analysis ................................ ................................ ................................ ........ 2 6 III. RESULTS ... ........... 28 Participant Characteristics ................................ ................................ .................... 28 Bivariate Correlations ................................ ................................ ........................... 28 Test of Study Aims ................................ ................................ ............................... 3 1

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ix IV. DISCUS SION .. 4 2 Overview ................................ ................................ ................................ ............... 4 2 Discussion of Results Related to Study Aims ................................ ....................... 4 2 Future Research Directions ................................ ................................ .................. 4 5 Clinical Implications ................................ ................................ ............................ 47 Limitations ................................ ................................ ................................ ........... 48 Conclusion ................................ ................................ ................................ ........... 5 0 REFERENCES .. 5 1 APPENDI X A: Study Recruitment Flyer CBCI ................................ ................................ ........ 6 0 B: Study Recruitment Flyer UCH ................................ ................................ ......... 6 1 C: Patient Consent Form CBCI ................................ ................................ ............. 6 2 D: Patient Consent Form UCH ................................ ................................ ............. 6 6 E: Caregiver Consent Form CBCI ................................ ................................ ........ 7 0 F: Caregiver Consent Form UCH ................................ ................................ ......... 7 4 G: Patient Pre Transplant Survey ................................ ................................ ......... 78 H: Caregiver Pre Transplant Survey ................................ ................................ ..... 9 3 I: Patient Post Transplant Survey ................................ ................................ ....... 1 0 5

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x LIST OF TABLES TABLE 1. Characteristics of Participants . 18 2. Patient Medical Characteristics 2 0 3. Variables, Measures/Sources of Data, Time Points, and Reporter .. 2 5 4 Tests of Normality and Internal Consistency for Variables Used in Inferential Statistical Analyses ... 27 5. Bivariate Correlati ons Between Predictor Variables... 29 6 Bivariate Correlations Between Predictor Variables, Covariates and Patient Distress Outcomes 3 1 7 Summary of Regression Analysis for Caregiver and Patient Relationship Satisfaction Predicting Post Transplant Patient Psychosocial Distress... 3 2 8 Summary of Regression Ana lysis for Caregiver and Patient Social Support Effectiveness Predicting Post Transplant Patient Psychosocial Distress.. 3 4 9 Summary of Regression Analysis for Caregiver and Patient Common Dyadic Coping Predicting Post Transplant Patient Psychosocial Distress ... 3 6 1 0 Summary of Multiple Regression Analysis for Social Support Effectiveness Predicting Post Transplant Patient Depression (CES D) ..... 38 11. Summary of Multiple Regression Analysis for Common Dyadic Coping Predicting Post Transplant Patient Transplant Specific Distress (IES R) ... 38 1 2 Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social Support Effectiveness Scores Predicting Post Transplant Patient Psychological Distress (BSI 18).... 4 0 1 3 Summary of Hierarchical Linear Regression Analysis for Social Support Effectiveness Predicting Post Transplant Patient Depression (CES D) 4 0

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xi LIST OF FIGURES FIGURE 1. Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress 1 3 2. Flowchart of Recruitment Accrual and Attrition.. 1 7 3. Secondary Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress .. 37

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1 C HAPTER I INTRODUCTION Background and Significance Hematopoietic stem cell transplantation (HSCT) 1 can be lifesaving for patients with certain cancers of the blood or bone marrow or in people who have hematological diseases. According to the Center for International Blood and Marrow Transplant Research (CIBMTR) i n the United States in 201 3 there were nearly 1 9 ,000 HSCTs, of which approximately 1 1 ,000 were autologous transplants (Pasquini & Wang, 201 4 ). In autologous HSCT, patients' own stem cells are harvested and infused back into the blood stream after receiving high doses of chemotherapy and/or total body radiation (U.S. Department of Health and Human Services, 2014). For patients undergoing allogeneic HSCT, which uses donor stem cells, there are increased hospitalization stays, graft versus host disease risk, and other acute and chronic complications (Copelan, 2006; Pasquini et al., 201 4 ). Fo r patients with active diffuse large B cell Non Hodgkin lymphoma a common diagnosis, 100 day post transplant survival rates from 2008 2012 for patients undergoing autologous HSCT we re 87.1% (CI = 83.4 90.1%) and rates were significantly lower for allogeneic HSCT using cells from a sibling 71.8% (CI 60.9 80.1%) and even lower for unrelated donor HSCT 68.8% (CI = 58.3 77.2%) (U.S. Department of Health and Human Services 2016 ). Multiple myeloma is the most common indication for autologous HSCT and among the 33,800 1 The term hematopoietic stem cell transplant (HSCT) will be used throughout this document. F or the purposes of this document it is synonymous with stem cell transplant (SCT), bone marrow transplant (BMT), and peripheral blood stem cell transplant (P B SCT).

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2 patients receiving these transplants between 2002 2012; the 3 year probability of survival was 74% 1% (Pasquini et al., 2014) Autologous HSCT can be conducted on an outpatient or shortened inpatient basis, and instrumental suppor t demands from medical staff are generally less than those for allogeneic HSCT patients, which may increase patient self care and caregiver responsibilities (Chow & Coyle, 2011; Garcia, Mumby, Thilges, & Stiff, 2012; Grimm, Zawacki, Mock, Krumm, & Frink, 2000; Tecchio et al., 2013; Wulff Burchfield, Jagasia & Savani, 2013). Whether undergoing allogeneic or autologous HSCT b y the time the transplant takes place, patients and their caregivers have most likely experienced a myriad of logistical incon veniences and disruptions in their daily routines, often including temporarily relocating or traveling long distances to transplant centers ( Chow et al., 2011 ). They must also learn to cope with numerous medical and psychosocial challenges, including distr essing medical procedures, protective isolation, restrictions in their routines, and acute and chronic side effects (e.g., immunosuppression, infections, nausea, fatigue, cognitive impairment, and sexual dysfunction), the threat of potential relapse and se condary cancers, financial challenges, and changes in their domestic, social, and occupational roles (Bevans, Mitchell & Marden, 2008; Chow et al., 2011; Mosher, DuHamel, Rini, Corner, Lam, J., & Redd, 2011; Tecchio et al., 2013). Irrespective of transplan t type, HSCT treatment and psychosocial recovery is a long term process that typi cally last s longer than physical recov ery (Andrykowski et al., 2005). Psychosocial Distress in HSCT According to the National Comprehensive Cancer Network (1999), psychoso cial distress is an unpleasant emotional, psychological, social, or spiritual experience (on a

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3 continuum from feelings of vulnerability, sadness, and fears, to problems that are disabling, such as true depression), which interferes with the ability to cope with cancer treatment. In a review of HSCT studies, Hjermstad and Kaasa (1995) found that overall mood disturbances were greater in HSCT patients than in other cancer populations. Nearly one third of HSCT patients have symptoms consistent with a diagnosis of clinical depression (Siegel, 2008), and some studies have shown that one quarter of HSCT patients demonstrate avoidance stress responses, while over one third have significant intrusive thoughts pre HSCT (Siston et al., 2000). Specific ally i n autologo us HSCT patients, pre HSCT levels of clinically elevated depression and cancer related distress have ranged from 11% to 55%, with no differences found between transplants conducted inpatient or outpatient (Frey et al., 2002; Grassi, Rosti & Albertazzi, 199 6; McQuellon et al., 1998; Sherman, Simonton, Latif, Spohn, & Tricot, 2004; Wettergren, Langius & Bjorkholm, 1997). Furthermore, when comparing rates of psychological distress and associated quality of life between allogeneic and autologous HSCT patients, studies show comparable (Andersson, Ahlberg, Stockelberg, & Persson, 2011; Hjermstad, Evensen, Kvaly, Fayers, & Kaasa, 1999, Tecchio et al., 2013) or higher depression and anxiety scores and lower quality of life scores for autologous HSCT patients (Hjerm stad et al., 1999; Hjermstad et al., 2004; Lee et al., 2001; Prieto et al., 2005). Distress and depression often peak prior to transplant, during isolation, and during the acute recovery phase; however, anxiety has been shown to vary widely across the en tire transplant timeline (Fife, Huster, Cornetta, Kennedy, & Akard, 2000; Hjermstad et al., 1999; Mosher, Redd, Rini, Burkhalter & DuHamel, 2009; Prieto et al., 2005; Siegel, 2008; Siston et al., 2001; Tecchio et al., 2013). Persistent levels of elevated d istress are also common (Hjermstad et al., 1999; Mosher et al., 2009; Rusiewicz, et al., 2008) with nearly one fifth of

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4 patients still exhibiting clinically significant depressive symptoms five years post HSCT (Syrjala et al., 2004). Greater post HSCT dist ress has been associated with longer hospital stays and recovery time, worse physical and sexual functioning, treatment non adherence, symptom burden, pain intensity, fatigue, poor sleep, lower quality of life, and lower survival rates (Andrykowski et al., 2005; Colon, Callies, Popkin & McGlave, 1991; Grulke, Larbig, Kachele & Bailer, 2008; Hoodin, Kalbfleisch, Thornton & Ratanatharathorn, 2004; Humphreys, Tallman, Altmaier & Barnett e, 2007; Loberiza et al., 2002; Prieto et al., 2002; Rodrigue, Pearman & Moreb, 1999; Syrjala et al., 2004; Wingard, Curbow, Baker & Piantadosi, 1991). In light of the rates of distress documented in HSCT patients and their potential impacts long term, it is important to have a greater understanding of specific factors that may be protective against HSCT patient distress, anxiety, and depression (Cooke, Grant, Eldredge, Maziarz, & Nail, 2011; Copelan, 2006; Wulff Burchfield et al., 2013). Partnered Dyads i n Oncology There has been a growing recognition of the importance of spousal relationships in oncology research (Bishop et al., 2007; Boyle et al., 2000; Gaston Johansson, Lachica, Fall Dickson, Kennedy, 2004; Langer, Abrams, & Syrjala, 2003; Langer, Brown & Syrjala, 2009). Often, disruption to the intimate relationship or poor adjustment to chronic diseases and cancer results in worse patient outcomes, as studies indicate marital distress exerts significant negative effects on immune function and health o utcomes (Ben Zur, Gilbar & Lev, 2001; Northouse, Mood, Templin, Mellon & George, 2000). In particular, intimate partner social support is an important predictor of patients' cancer adaptation (Giese Davis, Hermanson, Koopman, Weibel & Spiegel, 2000; Manne, Pape, Taylor & Dougherty, 1999). There is also growing literature recognizing the role of interdependence between

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5 marital partners on cancer outcomes (Mickelson, Lyons, Sullivan & Coyne, 2001). Because cancer affects both partners in a relationship on an individual and couple level, it is considered a dyadic stressor (Badr, Carmack, Kashy, Cristofanilli, & Revenson, 2010). On an individual level, the stressor is experienced through the lens of one's own particular needs and concerns. For example, patients could be more concerned about the long term implications of their illness while partners may be preoccupied with the immediate caregiving demands. At the couple level, relational well being is influenced by the couple's ability to work together to manage aspects of the stressor that reciprocally affect them (Badr et al., 2010) For example, how well does the couple make childcare decisions or manage treatment decision making or end of life issues. Maladaptive coping practices, such as avoidant behaviors, denial, and social withdrawal, have been consistently associated with increased levels of distress, anxiety, and depression among cancer patients and their partners (Manne et al., 1999; Manne & Glas sman, 2000). For nearly 80% of HSCT patient s the designated caregiver is the patient's romantic partner, resulting in an interdependence of patients and their partners (T. Simoneau, personal communication, June 27, 2014). This partnered dyad may provide a unique opportunity to explore factors which may be predictive of or protective against HSCT patient psychosocial distress, that are inherent to an intimate partnership such as r elationship satisfaction (RS) perception of partner support, and strength of dyadic coping Dyadic Adjustment and Relationship Satisfaction in HSCT In particular, marital adjustment and satisfaction have been shown to be important components of the cancer experience and in turn to psychological adjustment to cancer (Banthia, Malcarne, Varni, Ko, Sadler, & Greenbergs; 2003), with resilient couples grow ing

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6 closer in the face of cancer (Drabe, Wittmann, Zwahlen, BŸchi & Jenewein, 2013). Furthermore, studies have demonstrated that couples who experience dissatisfying relationship changes as part of the treatment process report reduced spousal support, abi lity to cope, decreased quality of life, as well as increased symptoms of psychological distress, depression, and anxiety (Hagedoorn, Buunk, Kuijer, Wobbes & Sanderman, 2000; Northouse et al., 2000). RS has been explored among samples including allogeneic and autologous HSCT survivors (Andrykowski et al., 2005), where, relative to healthy controls, HSCT survivors reported poorer dyadic adjustment and poorer RS In a systematic review by Beattie and Lebel (2011), f ive studies were identified focused on HSCT patients and their spousal caregivers Of these, four examined RS utilizing the satisfaction subscale of the Dyadic Adjustment Scale ( Langer et al. 2003; Langer, Rudd, & Syrjala, 2007 ; Langer et al. 2009; Langer, Yi, Storer, & Syrjala, 2010 ) ; howe ver, only three reported on patient outcomes. Langer et al. ( 2003) assessed change in RS and found that partners were matched in perception pre HSCT ; however, at 6 months and one year post HSCT caregivers reported significantly lower satisfaction than patients. Langer et al. (2010) also assessed dyadic adjustment and change in RS pre HSCT and at 5 intervals up until 5 years after transplant. They found that patient and male caregiver satisfactio n was stable over time, but female caregiver s reported reductions in satisfaction at each time point. Finally, Langer et al. (2009) found that the more caregivers and patients utilized protective buffering or felt buffered, which refers to hiding cancer re lated thoughts and concerns from one's partner, both dyad members had decreased RS and decreased mental health. These findings highlight that within the current HSCT dyad literature studies focus on dyadic adjustment, change in RS or RS as an outcome No current studies exist assessing

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7 the impact of RS as a predictor of patient psychosocial outcomes. Furthermore, o f the current studies, RS is only assessed within heterogeneous (allogeneic and autologous) HSCT populations, leaving room for further explor ation of RS of partnered dyads within autologous HSCT populations Social Support in HSCT In HSCT, social support is a term that has been used to encompass quantity (reported receipt of support, usually during a specific time period) and quality (perceived levels of support) of support from family, friends, spouses, and caregivers (Barrera, 1986; Beattie, Lebel & Tay et al., 2013). Higher perceived social support and stable pre HSCT social support have been associated with reduced post HSCT distre ss, anxiety, post traumatic stress symptoms, and depression when controlling for initial levels of depression (Bevans, Wehrlen, Prachenko, Soeken, Zabora & Wallen, 2011; Fife et al., 2000; Grassi et al., 1996; Jacobsen et al., 2002; Jenks, Kettmann & Altma ier, 2008; Syrjala et al., 2004). However, in a systematic review of the HSCT literature by Beattie et al. (2013), the authors reported that the specific impact and benefits of the various attributes (quantity versus quality or perception of quality) and s pecific types (e.g. instrumental, informational and emotional) of support need to be further assessed to delineate what components of support, if any, have the most impact on HSCT patient outcomes. In a retrospective study of allogeneic patients focused on quantity of support, researchers found survival outcomes were associated with greater caregiver visit frequency and duration (Foster, McLellan, Rybicki, Dabney, Copelan & Bolwell, 2013). This study also found that support from a designated caregiver correlate s with better support and 4 year survival rates; however they did not investigate what aspects of the rela tionship are most

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8 beneficial. Quality of social support may be particularly influentia l, as dyad research in cancer indicates that partner intentions of being supportive are often not perceived as supportive by patients (Manne, Ostroff, Winkel, Grana, & Fox, 2005; Schulz & Schwarzer, 2004). In particular, Frick, Motzke, Fischer, Busch, and Bumeder (2005), in autologous HSCT patient s demonstrated that patients who perceived their support as problematic (e.g., felt criticized or victimized) had poorer survival rates. A retrospective study by Rini et al. (2011) of autologous and allogeneic HS CT survivors 1 3 years post HSCT examined both the quantity and quality of support on patient distress. In particular, the study focused on patients' perce ption of social support effectiveness (SSE) received from their partner across the domains of instrum ental, informational, and emotional support using the Social Support Effectiveness Questionnaire (Rini & Dunkel Schetter, 2010). Results revealed that perceived effectiveness, defined as support that met the patient's needs in terms of quantity and quality was more influential in predicting patient distress than quantity of support alone. Additionally, higher quantity of support that was perceived as ineffective was associated with elevated patient distress on the Brief Symptom Inventory (Derogatis, 2004), when controlling for sociodemographic and medical characteristics. These findings highlight that within the current HSCT literature, there are several studies examining social support ; however, most studies have been retrospective, and have generally not included dyads in which both partners' reports were gathered. Additionally existing studies have not specific ally delineated the types of support that are most beneficial to patients and why. Furthermore, much of current research has focused on heterogeneous patient populations The support needs for these two transplant population s may differ,

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9 b ecause autologous HSCT patients experience fewer treatment complications and physical limitations than allogeneic HSCT patients (Eldredge, Nail, Maziarz, Hansen, Ewing, & Archbold, 2006; T. Simoneau, personal communication June 27, 2014 ). In sum further exploration across the domains of social support and its perceived effective ness for patients within the context of the partnered dyad would be valuable Dyadic Coping in HSCT Terms such as dyadic, communal, interpersonal, relationship focused, and collaborative coping have been used to characterize interpersonal aspects of coping beyond traditional ideas of social support (Ben Zur et al. 2001). The concept of communal coping was first described by Lyons, Mickelson, Sullivan, and Coyne (1998) as a dyadic process that involves appraising a stressor ( e.g. patient's chronic condition) as our rather than your or my, problem and taking cooperative we base d action to address it. Likewise, in dyadic coping the couple collectively negotiates the emotional aspects of their shared experience or engages in collaborative coping, such as joint problem solving (Berg et al., 2008; Berg & Upchurch, 2007; Bodenman, 20 08; Coyne & Smith, 1991). According to a dyadic perspective, when couples face a common stressor, such as chronic illness, coping is broader than just support received from a partner includ ing other stress management behaviors both partners engage in toge ther (Coyne & Smith, 1994). Although dyadic stressors affect both partners, most r esearch looking at couples coping with cancer focuses on the partner as provider of support and patient as the recipient of support, instead of a communal approach (Badr et al., 2010) Communal coping has been assessed in the context of we talk use in a limited number of chronic illness and oncology populations. In a study with heart failure patients and their partners, researchers found that we talk use by partners during a conjoint interview predicted

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10 positive changes in patient symptoms independent of the influence of patient we talk use This highlight s the significant role caregiver support can play in a patient's health and the importance of including a partner's report in future studies (Rohrbaugh, Mehl, Shoham, Reilly & Ewy, 2008). Additionally, in a study of families coping with breast cancer, partner we talk use was associated with better dyadic adjustment and lower patient depressive symptoms (Robbins, Mehl, Smith & Weihs, 2013). The concept of communal coping has been operationalized through use of the Dyadic Coping Inventory (DCI) and particular ly the joint (common) scale Common dyadic coping (CDC) assesses coping that occurs when both partners experience stress and symmetrically work together to handle stressful situations using a we approach (Bodenmann, 2008 ). It involves joint problem solving, coordinating everyday demands, relaxing together, as well as mutual calming, sharing, and expressions of solidarity to help the other man age their stress (Badr et al., 2010). CDC has been explored in recent studies of patients with chronic obstructive pulmonary disease (Meier et al., 2007) and cancer (Badr et al., 2010) where it was associated with lower levels of psychosocial distress. A l ongitudinal study by Badr et al. ( 2010 ) among couples facing metastatic breast cancer demonstrated that higher levels of CDC used to manage shared cancer stressors decreased partner cancer related distress using the Impact of Event Scale (Weiss & Marmar, 1997) and improved both patient and partner RS using the Dyadic Adjustment Scale (Bodenmann, 2008). According to Badr et al. (2010) future research should examine whether the benefits of engaging in CDC extend to helping alleviate general distress and determining whether specific ally cancer related distress may be a more appropriate target for intervention CDC has proven to be a valuable coping style in other chronic illness and cancer

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11 populations. To date, no studies have been conducted in HSCT to assess the potential role or benefit of CDC This leaves room for exploration of th is construct among partnered dyads as a potential predictor of post HSCT patient psychosocial distress. Contributions to the Literature Autologous HSCT patients are distinct from allogeneic in clinical presentation, treatment options, recovery times, and mortality rates. Autologous HSCT patients have a low likelihood of death and severe complications of HSCT, creating an opportunity to more purely e xamine relationship factors and psychosocial outcomes, with possible broader generalization of findings to other oncology patient populations (T. Simoneau, personal communication, June 27, 2014). There is limited research focusing specific ally on patients undergoing autologous HSCT demonstrat ing a need for closer examination of this population (Garcia et al., 2012). Most often in HSCT, caregivers are patients romantic partners, providing a rich dyadic population with which to evaluate the influence of fa ctors inherent in an intimate partnership. Of the limited dyadic research in HSCT to date, there were minimal studies assessing pre HSCT factors unique to the dyad that may be predictive of patient post HSCT psychosocial outcomes. The limited existing studies on HSCT patients and their partnered caregivers focused on dyadic adjustment or RS largely evaluating change over time or these constructs as outcome s No dyad studies were found assessing SSE and the specific domains of support including instrumen tal, informational, and emotional support Furthermore, CDC has not been assessed in HSCT. These concepts (RS, SSE, and CDC) have also not been examined together, further highlighting the potential benefit of this investigation.

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12 Specific Aims and Hypothe ses There is limited research examining married / romantic partner dyads ( referred to as dyads in the document ) comprised of autologous HSCT patients (referred to as patients' or PT' in the document ) and their partnered caregivers (referred to as partners caregivers or CG' in the document ). The purpose of this study was to further explore potential factors predictive of and protective against post HSCT patient psychosocial distress (referred to as distress in the document and is inclusive of psychological distress, transplant specific distress, and depression) Specific ally, this study aim ed to increase understanding of how pre HSCT dyad relationship satisfaction ( RS ) social support effectiveness ( SSE ) and common dyadic coping ( CDC ) impac t ed patient post HSCT distress. The following aims and hypotheses guided this study: Aim 1 Does pre HSCT RS predict post HSCT patient distress when controlling for pre HSCT patient distress ? Hypothesis 1.1. P re HSCT caregiver RS will be negatively associated with post HSCT patient distress Hypothesis 1.2. P re HSCT patient RS will be negatively associated with post HSCT patient d istress. Aim 2. Does pre HSCT perceived SSE predict post HSCT patient distress when controlling for pre HSCT patient distress ? Hypothesis 2.1. P re HSCT caregiver SSE will be negatively associated with post HSCT patient distress Hypothesis 2.2. P re HSCT patient SSE will be negatively associated with post HSCT patient distress.

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13 Aim 3. Does pre HSCT CDC predict post HSCT patient distress, when controlling for pre HSCT patient distress ? Hypothesis 3.1. P re HSCT caregiver CDC will be negatively associated with post HSCT patient distress Hypothesis 3.2. P re HSCT patient CDC will be negatively associated with post HSCT patient distress. Aim 4. (Exploratory) 4 .1 Test multivariate models with the significant predictors from Aims 1 3 to evaluate which variables best predict post HSCT patient distress. 4 .2. Test a multivariate model to evaluate if caregiver or patient perceived quality of support predicts post HSCT patient psychosocial distress, above and beyond perceived quantity of support provided. Conceptual Model A conceptual model (Figure 1) illustrate d the proposed directionality of the relationships between pre HSCT dyad RS SSE and CDC and post HSCT patient distress N umbered arrows correspond to Aims 1 3 above. Figure 1. Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress Relationship Satisfaction Social Support Effectiveness Common Dyadic Coping Patient Psychosocial Distress Psychological Transplant-Specific Depression !!! Aim 2 Aim 1 Aim 3

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14 CHAPTER II METHOD Study Setting This longitudinal study was conducted at the Colorado Blood Cancer Institute (CBCI) at Presbyterian/St. Luke's Medical Center (P/SL) and at the Blood Cancer and Hematological Malignancies and BMT Program at the University of Colorado Hospital (UCH). R ecruitment and Enrollment Procedures After obtaining HCA HealthONE Institutional Review Board and Colorado Multiple Institutional Review Board approval, the doctoral student conducted staff trainings to provide a study overview and distribute recruitment flyers ( Appendix A and B). Psychosocial staff (i.e., psychologists, psychology practicum students, and social workers) identified participants f or inclusion, primarily during the pre HSCT patient intake Designated staff either consented participants or contacted the doctoral student with participants' information for follow up. During consent, the study was explained in a private or semi private area and if both caregiver and patient understood the study information and agreed to participate, they were consented with separate consent forms (Appendices C, D, E and F). Data Collection Procedures Pre Transplant Survey. Participants preferring web based surveys received a n e mail with a link to the survey and directions informing them they could start and stop the survey as needed to complete it. Those preferring paper based survey s were provided the surveys in a envelope with the contact inform ation for Dr. Maikovich Fong or Dr. Brewer (Appendices G and H). The majority of caregivers (64.6%) and patients (77.1%) preferred web based pre HSCT surveys. Directions for both surveys asked participants to complete the

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15 survey without their partner present to improve the likelihood of answering q uestions truthfully, particularly those about RS Participants were asked to complete the surveys at least by the day of the patient's transplant P articipants were contacted by p hone or e mail approximately 5 10 days before it was a week from their transplant, reminding them to complete their survey. Post Transplant Survey. The patient post HSCT survey (Appendix I), was either : 1) sent via e mail with a link to the web based survey or 2) provided to patients in a n envelope approximately 28 days after the patient's transplant date, give or take 5 days. The majority of post HSCT surveys (83.3%) were conducted by web because patie nts were discharged from the hospital and some were not returning to clinic regularly. Patients were asked to complete the survey within one week. Once received, the doctoral student attempted to double check that each question was answered and followed up with participants to complete any missing answers when possible If the surveys were not received within one week, every attempt was made in the form of reminder e mails and phone calls to have the surveys completed and returned. However, days post HSCT for survey completion varied greatly with a mean of 37.49 ( SD = 19.20). Recruitment Accrual and Attrition Recruitment lasted 12 months with the goal of recruiting a minimum of 35 couples. T h is sample size was chosen based on the approximate number of new patients undergo ing HSCT at CBCI on an annual basis. In 2013, there were 238 transplants, 140 of which were autologous HSCT a nd over three fourths of caregivers were romantic partners (T. Simoneau, personal communication, May 20 & June 27, 2014). It was as sumed that f or this study, of those eligible, approximately 75% of couples would agree to participate, which would result

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16 in 50 couples enrolled within 12 months (T. Simoneau, personal communication, May 20 & June 27, 2014). This sample size was believed t o be sufficient to test the research questions based on sample sizes of other similar dyad studies ( Langer et al., 2009; Langer et al., 2007 ; Meier et al., 2007; Regan et al., 2014) At CBCI, recruitment and enrollment spanned from mid December 2014 to mi d December 2015. By early April 2015, enrollment was low possibly due to stringent and narrowly defined inclusion and exclusion criteria. The decision was made to include participants undergoing a second transplant, and to add a secondary recruitment site. Dr. Benjamin Brewer from UCH agreed to participate in the study. By early June 2015, final institutional review board approval was obtained and recruitment and enrollment spanned from early June 2015 to mid December 2015 at UCH. At CBCI, 1 46 patients were screened for eligibility. Of those who met inclusion criteria and simply declined to participate, reasons for non participation included disinterest in a psychological study, feeling overwhelmed or feeling too busy. At UCH, information was only available on 11 patients who were screened for eligibility. Overall, r ecruitment was low at this site with study staff citing that numerous participants simply declined to participate. It was not possibl e to gather exact numbers of how many people were approached about the study and declined and reasons for non participation. Difficulty collecting this information was due to staff turnover and detailed records not being kept by some of the multiple UCH ps ychosocial staff members, despite attempts by the doctoral student to gather this information The final sample of participants that completed both pre and post HSCT measures, included 48 couples, the majority (n = 41, 85.4%) of which were from CBCI. See Figure 2 for complete recruitment accrual and attrition information.

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17 Note: Denotes criteria changed April 2015 to include patients undergoing their second transplant Figure 2. Flowchart of Recruitment Accrual and Attrition Participants Inclusion Criteria. C aregivers and p atients were required to : 1) be married or partnered, co habitating, and involved in a romantic relationship; 2) be 18 years of age or older; and 3) be able to read, understand, and speak English because many study instruments were only validated in English. P atients were required to: 1) be a candidate for an inpatient or outpatient autologous HSCT; 2) plan to receive treatment at CBCI or UCH; and 3) have a pre HSCT intake performed by a psychosocial team member Exclusion Criteria. C aregivers and patients were excluded if either had a current physical, psychological, medical, or cognitive condition that was determined by Dr. A ndrea Patients Screened N = 157 Eligible Patients N = 92 Not m arried/ p artnered: N = 12 Non English s peaking: N = 2 Undergoing 2 nd HSCT : N = 4 Family as p rimary CG: N = 22 Friend as CG: N = 5 Psychological i ssues: N = 2 Stiff p erson s yndrome: N = 5 Unable to be d etermined: N = 13 Could not consent both CG / PT: N = 4 Did not g et HSCT : N = 7 Refused: N = 10 Missed: N = 15 Recruited /Consented N = 56 Couples Did not g et HSCT : N = 2 In complete pre HSCT surveys: N = 4 C omplete d Pre HSCT data N = 50 Couples Obtained C omplete D ata N = 48 Couples Passed away : N = 2

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18 Maikovich Fong at CBCI or Dr. Benjamin Brewer at UCH to interfere with their ability to consent and/or participate. Additionally, patients with stiff person syndrome were excluded, as they have unique complications outside of the study parameters. D emographics General Health, and Mental Well Being Patients were primarily male ( n = 32, 66.7%) and caregivers were primarily female ( n = 3 2 6 6 7 %) Participants had a mean age of 61.69 ( SD = 8.65), were primarily Caucasian (89.6%), married (91.7%), worked full or part time (51.0%), and were college educated (53.1%) All couples were heterosexual (100.0%) had a mean length of relationship of 30.06 years ( SD = 14.03) and two couples (4.3%) were in couples therapy The majority of caregivers (64.6%) and patients (50.0%) rated their own health as "excellent" or "very good" and interestingly, caregivers perceived the patient's diagnosis as more severe than patients appraised the severity. Pre HSCT fifteen participants ( 31.3 %) reported having a diagnosis of anxiety and ten (2 2 9 %) reported having a diagnosis of depression. Refer to Table 1 for a summary of participant demographics, general health and mental well being information. Table 1. Characteristics of Participants Demographic Variables CG PT Gender N (%) Female 31 (64.6) 16 (33.3) Male 17 (35.4) 32 (66.7) Race/Ethnicity N (%) Caucasian, Not of Hispanic Origin 42 (87.5) 44 (91.7) Hispanic 3 (6.3) 1 (2.1) Black, Not of Hispanic Origin Multi Ethnic/Other 1 (2.1) 2 (4.2) 1 (2.1) 2 (4.2) Age Mean ( SD ) 61.88 (8.20) 62.8 (7.37) Children N (%) Number of Children N (%) 1 3 4+ 43 (89.6) 38 ( 88.4 ) 4 (9. 2 ) Unreported Number of Children Children Living in the Home N (%) 1 (2.4) 9 (18.8)

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19 Patient Medical Characteristics. The majority of patients were undergoing their first autologous HSCT (93.8%) and were considered low disease risk (63.8%) by the International Blood and Marrow Transplant Research criteria (CIBMTR) and low psychosocial risk (91.4%) as determined by the Transplant Evaluation Rating Scale (TERS). Table 1 (cont.) Education Level 12 th Grade 7 (14.6) 7 (14.6) Some College 19 (39.6) 12 (25.0) College Degree Graduate D egree 12 (25.0) 10 (20.8) 13 (27.1) 16 (33.3) Employment Status N (%) Employed F ull T ime 17 (35.4) 13 (27.1) Employed P art T ime/Homemaker 8 (16.7) 8 (16.7) Full Time Student Temporary Medical Leave/Disability Retired Unemployed Permanently Unable To Work 3 (6.3) 1 (2.1) 16 (33.3) 3 (6.3) 0 (0.0) 0 (0.0) 12 (25.0) 13 (27.1) 0 (0.0) 2 (4.2) Household Income N (%) $0 50,000 11 (23.0) $50,001 100,000 21 (43.7) 100,001 + 16 (33.3) General Health & Mental Well Being Variables CG PT Perceived Caregiving Length (Months) Median (Range) Perception of Patient Diagnosis Severity N (%) Very Severe Somewhat Severe Mildly Severe Not At All Sever e Perception of Own Health N (%) Excellent Very Good Good Fair 6.50 (.50 243) 30 (62.5) 15 (31.3) 2 (4.2) 1 (2.1) 11 (22.9) 20 (41.7) 14 (29.2) 3 (6.3) 7.0 (1 577) 21 (43.8) 24 (50.0) 3 (6.3) 0 (0.0) 6 (12.5) 18 (37.5) 5 (10.4) 2 (4.2) Chronic Health Condition N (%) 12 (25.0) 20 (41.7) Chronic Health Condition Interference N (%) Not At All A Little A Great Deal Current Mental Health Diagnoses N (%) Anxiety Depression Current Psychotropic Medication N (%) Current Individual Counseling/Therapy N (%) 5 (41.7) 6 (50.0) 1 (8.3) 7 (14.6) 5 (10.4) 7 (77.8) 2 (22.2) 7 (35.0) 9 (45.0) 4 (20.0) 8 (16.7) 6 (12.5) 8 (72.7) 0 (0.0)

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20 The most common diagnosis was Multiple Myeloma (52.1%) followed by Non Hodgkin's Lymphoma (43.8%) Patient m edical characteristics are located in Table 2 Table 2 Patient Medical Characteristics Note: KPS = Karnofsky Physical Functioning Score; TERS = Transplant Evaluation Rating Scale Measures Data w ere gathered through two mechanisms: 1) patient pre and post HSCT surveys and a caregiver pre HSCT survey, and 2) patient medical database review post discharge. A description of variables, measures/sources of data, data collection time points and reporters can be found in T able 3 Measures were scored according to commonly used procedures so Patient Medical Variables N (%) Mean ( SD ) Length of Illness (Months) Comorbidities Low/Intermediate High 33 (68.8) 15 (31.3) 25.24 (39.23) 1.90 (2.08) Length of Hospitalization (Days) 22.02 (6.8 0 ) Before Transplant After Transplant Inpatient Transplant Transplant Number 1 2 3 Clinical Diagnoses 46 (95.8) 45 (93.8) 2 (4.2) 1 (2.1) 5.15 (2.85) 17.91 (5.09) Multiple Myeloma 25 (52.1) Non Hodgkin's Lymphoma Hodgkin's Lymphoma 21 (43.8) 1 (2.1) Other 1 (2.1) Disease Stage Diffuse Large B cell Lymphoma MMIgG MM Light Chain 13 (26.5) 11 (22.4) 7 (14.3) Disease Risk Low 30 (63.8) Intermediate 11 (23.4) High 6 (12.8) KPS 90.83 (9.64) Psychosocial Risk (TERS) Low Moderate High 42 (91.4) 4 (8.7) 0 (0.0)

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21 results could be easily compared to existing studies T ests of normality and internal consistency for variables used in inferential statistical analyses can be found in Table 4 Demographics General Health and Mental Well Being C aregiver and patient were assessed for demographic, general health and mental well being information pre HSCT through self report To limit burden, only patients w ere asked relationship status, length of time in a relationship, number of children, and household income questions T hese answers were used as proxy for their partner. A complete list of information gathered through self report is located in Table 3. Relati onship Satisfaction. C aregiver and patient relationship satisfaction was assessed pre HSCT through a self report measure, t he Revised Dyadic Adjustment Scale (RDAS ) This measure assess es seven dimensions of couples' relationships within three overarching categories including consensus in decision making, values and affection; satisfaction in the relationship with respect to stability and conflict regulation; and cohesion as seen through activities and discussion (Busby, Christensen, Crane, & Larson, 1995). Ratings are on a scale from 0 4 ("never to everyday ) or from 0 5 ( "always disagree to al ways agree" or "all the time" to "never" or "never" to "more of ten" ), with items 7, 8, 9, and 10 reverse scored. Scores of 48 and above indicate relationship non distress and scores of 47 and below indicate relationship distress. Higher scores on the satisfaction subscale indicate greater RS For this study, the RDAS s atisfaction subscale scores (summed) w ere used as continuous variable s in inferential statistical analyses. Social Support Caregiver and patient s ocial support quantity and perceived effectiveness were assessed pre HSCT through separate self report measure s Social Support Quantity. The Partner Responses to Cancer Inventory (PRCI )

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22 assesses the frequency with which partners provide specific types of instrumental ( e.g. household chores or errands), informational (e.g. advice or guidance) and emotional support (e.g. empathy or affection) (Manne & Schnoll, 2001). For this study, language was adapted to reflect that patients were having an upcoming transplant The caregiver measure was adapted to assess their perce ption of quantity of support provided to their partner. Ratings are on a scale from 1 4 ("never responds this way" to "often responds this way") with higher scores indicating greater quantity of support in the prior month. For this study, PRCI to tal scores (averaged) were used as continuous variable s in inferential statistical analyses. S ocial Support Effectiveness. The Social Support Effectiveness Questionnaire (SSE Q) assess es perceived SSE across the domains of instrumental informational, and emotional support (Rini & Dunkel Schetter, 2010). For this study, the time period was adapted from past three months to past month and adapt ions were made to the caregiver measure to include language assessing their perceived effectiveness supporting their partners. Q uestions assess ed : 1 ) how well quantity matched amount needed on a scale from 0 4 ("very poor" to "excellent"); 2 ) the extent to which the patient wished support had been different on a scale from 0 4 ("not at all" to "extremely"); 3 ) the extent to which support was provided skillfully on a scale from 0 4 ("not at all" to "extremely"); 4 ) how difficult support was to get on a scale from 0 4 ("never" to "always"); and 5 ) whether support was offered without being asked on a scale from 0 4 ("never" to "always"). Ten additional it ems assess ed unintended negative byproducts of receiving support (e.g., feelings of guilt or indebtedness with 0 being "yes" and 2 "no"). H igher scores indicat e more effective support. For this study, SSE Q total scores (summed) and instrumental, informati onal and emotional subscale scores ( each summed) were used as continuous variables in inferential statistical analyses.

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23 Dyadic Coping. C aregiver and patient common dyadic coping was assessed pre HSCT through a self report measure, t he Dyadic Coping Inventory (DCI) This measure a ssesses dyadic coping and perceived communication of couples under stress (Bodenmann, 2008; Ledermann et al., 2010). D yadic coping is assessed as a multidimensional construct that includes: supportive, delegated, negative, and joint (common) dyadic coping rated on a scale from 1 5 ("very rarely" to "very often"). CDC assesses when both partners experience stress and symmetrically work together to handle stressful situations and h igher scores indicate greater communal coping Scores of less than 111 indicate below average dyadic coping, scores of 111 145 indicate normal dyadic coping, and scores greater than 145 indicate above average dyadic copin g. For this study, the joint (common) subscale scores (summed) were used as continuous variables in inferential statistical analyses. Psychosocial Distress Patient distress was assessed pre and post HSCT through three separate self report measures of: 1) psychological distress, 2) transplant specific distress, and 3) depression Psychological Distress The Brief Symptom Inventory 18 (BSI 18) assesses psychological distress and psychiatric disorders in medical and community populations (Derogatis, 2004). Items measur e depression, anxiety, somatization and general distress (global severity index: GSI) over the last week on a scale from 0 4 ("not at all" to "extremely") Scores are converted to a standardized score (T score) Higher scores indicate m ore psychological distress. Clinically meaningful psychological distress is indicated by a T score greater than 63. For t his study BSI 18 total T scores were used as continuous variables in inferential statistical analyses.

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24 Transplant Specific Distress The Impact of Event Scale Revised (IES R ) assess es subjective distress related to a specific stressor ( Weiss & Marmar, 1997 ). For this study, the measure was adapted to ask respondents to focus on the patient's transplant as the stressful event. Verbiage for the pre HSCT survey asked about the upcoming transplant and items 7, 14, and 17 were modified to reflect that the transplant had not yet occurred. Adaptations such as these have been made in other dyad studies assessing "the upcoming BMT" (Siston et a l., 2001) and "your and your spouse's cancer and HCT" (Bishop et al., 2007). Participants indicate d how much they were distressed or bothered by difficulties associated with this event during the past week from 0 4 ("not at all" to "extremely") with highe r scores indicating more transplant specific distress. For this study, IES R total scores (summed) were used as continuous variables in inferential statistical analyses. Depression The Center for Epidemiological Studies Depression Scale (CES D) assesses depressive symptoms (Radloff, 1977). Items measure how often depressive symptoms were experienced in the past week on a scale from 0 3 ("rarely or none of the time: less than one day" to "most or all of the time: five to seven days") The CES D i s scored by reversing items 4, 8, 12, and 16 then summing all responses with higher scores reflecting a higher level of depression (Raldoff, 1977). A score of 16 or more suggests a clinical level of depression. For this study, CES D total scores (summed) were used as continuous variable s in inferential statistical analyses. Medical Information Relevant patient medical information was a ssessed after discharge by the doctoral student with the help of identified data personnel at each site. Of note, c omorbidities were physician determined according to the Hematopoietic Cell Transplant Co morbidity Index (HCT CI) disease risk was physician determined according

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25 to the Center for International Blood and Marrow Transplant Research criteria (CIBMTR) and psychosocial risk was determined by a psychosocial team member after intake according to the Transplant Evaluation Rating Scale (TERS) A full list of information collected can be found in Table 3. Table 3 Variables, Measures/Sources of Data, Time Points, and Reporter Variable Category Measures/Sources of Data Time Point Report Demographics General Health and Mental Well Being Predictors Relationship Satisfaction (RS) Social Support Perceived Quantity Perceived Effectiveness (SSE) Common Dyadic Coping (CDC) Outcomes Psychological Distress Transplant Specific Distress Depression Date of birth gender, racial/ethnic background, education level, employment status, occupation caregiving length general health status, perceived severity of patient illness, chronic conditions or illnesses, current mental health diagnoses, current psychotropic medications, current psychotherapy or counseling Number of children, household income, r elationship statu s, length of time in relationship RDAS RS: Revised Dyadic Adjustment Scale Satisfaction Subscale PRCI: Partner Responses to Cancer Inventory SSE Q: Social Support Effectiveness Questionnaire DCI CDC: Dyadic Coping Inventory Joint ( Common ) Dyadic Coping Subscale BSI 18: Brief Symptom Inventory 18 IES R: Impact of Events Scale Revised CES D: Center for Epidemiological Studies Depression Scale Pre HSCT Pre HSCT Pre HSCT Pre & P ost HSCT C G / P T P T C G / PT P T Medical Information Inpatient/outpatient status, clinical diagnosis, length of illness before transplant, disease stage, transplant date, comorbidities disease risk, length of hospitalization before and after transplant, Karnofsky physical functioning score psychosocial risk, discharge date Post HSCT P T

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26 Data Analysis Descriptive Statistics. Data collected with Redcap software was analyzed using IBM SPSS software. Data were restructured so that the unit of analyses was the couple. Descriptive statistics were used to describe the data and correct any errors in data entry. Univariate analyses (e.g. frequencies, histograms, and measures of central tendency) revealed no outliers or violations to normality. Because regression analyses were conducted at the couple level, the assumption of independence was not violated. It was also noted that no predictor variables were extremely correlated (r > .80) suggesting that measures were assessing unique constructs This reduc ed concern for issue s of multicollinearity that could arise during exploratory analyses that include d multiple predictors. It was not necessary to transform or evaluate data using nonparametric methods Means and standard deviations of measures are in Table 4 Missing Data As anticipated, t here was minimal missing dat a; no pre HSCT variables were missing more than 2 responses and no post HSCT variables were missing any responses. As a result it was not necessary to use statistical methods to address the issue of missing da ta. Statistical Analys i s. C orrelations were performed at multiple time points during the data analyses. Bivariate correlations between all measured variables were examined to understand the relationships between variables. A series of linear regressions were conducted to determine which pre HSCT constructs (RS, SSE, and CDC) separately predict ed post HSCT patient distress (psycho logical distress, transplant specific distress and depression) when controlling for pre HSCT distress. Separate regressions we re run using the caregiver and patient scores. For the exploratory analyses t he significant predictors from the linear

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27 regressions were assessed in a series of multiple regressions and h ierarchical linear regression models. Caregiver and patient scores we re both included in models to investigate their ability to predict patient distress. Table 4 T ests of Normality and Internal Consistency for Variables Used in Inferential Statistical Analyses Pre HSCT: CG Variables Mean ( SD ) Skewness (Std. Error) Kurtosis (Std. Error) Cronbach's alpha Number of Items Possible Range RDAS RS 16.29 (1.91) 0.84 (0.34) 0.53 (0.67) 0.67 4 0 20 PRCI SSE Q Total SSE Q Instrumental SSE Q Informational SSE Q Emotional 3.62 (0.34) 58.35 (8.63) 14.90 (2.35) 14.48 (2.50) 15.08 (2.69) 0.86 (0.34) 0.40 (0.34) 0.27 (0.34) 0.72 (0.34) 0.69 (0.34) 0.21 (0.68) 0.85 (0.67) 0.58 (0.67) 0.13 (0.67) 0.26 (0.67) 0.66 0.87 0.70 0.60 0.72 8 25 5 5 5 1 4 0 80 0 20 0 20 0 20 DCI CDC 17.54 (4.66) 0.34 (0.34) 0.06 (0.67) 0.83 5 0 25 Pre HSCT: PT Variables Mean ( SD ) Skewness (Std. Error) Kurtosis (Std. Error) Cronbach's alpha Number of Items Possible Range RDAS RS PRCI SSE Q Total SSE Q Instrumental SSE Q Informational SSE Q Emotional 16.08 (1.69) 3.55 (0.40) 65.06 (9.91) 16.15 (2.69) 15.44 (2.81) 15.94 (3.24) 0.89 (0.34) 0.83 (0.35) 0.72 (0.34) 0.65 (0.34) 0.03 (0.34) 0.94 (0.34) 0.06 (0.67) 0.01 (0.68) 0.11 (0.67) 0.26 (0.67) 0.28 (0.67) 0.64 (0.67) 0.55 0.70 0.91 0.75 0.82 0.88 4 8 25 5 5 5 0 20 1 4 0 80 0 20 0 20 0 20 DCI CDC 17.88 (3.93) 0.24 (0.34) 0.22 (0.67) 0.89 5 0 25 BSI 18 50.00 (10.00) 1.43 (0.35) 2.14 (0.68) 0.87 18 0 72 IES R 15.26 (13.76) 0.75 (0.35) 0.80 (0.68) 0.94 22 0 88 CES D 10.00 (8.62) 1.40 (0.35) 1.52 (0.68) 0.88 20 0 60 Post HSCT: PT Variables Mean ( SD ) Skewness (Std. Error) Kurtosis (Std. Error) Cronbach's alpha Number of Items Possible Range BSI 18 50.00 (10.00) 0.80 (0.34) 0.03 (0.67) 0.77 18 0 72 IES R 7.58 (9.13) 1.62 (0.34) 1.76 (0.67) 0.93 22 0 88 CES D 11.85 (7.57) 1.47 (0.34) 2.83 (0.67) 0.86 20 0 60 Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale); PRCI = Partner Responses to Cancer Inventory (Quantity of SSE) ; SSE Q = Social Support Effectiveness Questionnaire ; (Instrumental, Informational, Emotional Subscales); DCI CDC = Dyadic Coping Inventory (Common Dyadic Coping Subscale); BSI 18 = Brief Symptom Inventory 18 (Psychological Distress) ; IES R = Impact of Event Scale Revised (Transplant Specific Distress) ; CES D = Center for Epidemiological Studies Depression Scale (Depression)

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28 CHAPTER III RESULTS Participant Characteristics For the RDAS ( total score ) caregiver s had a mean score of 52.57 ( SD = 7.56) and patients had a mean score of 52.72 ( SD = 6.78) T hirty five caregivers (76.1%) and patients (74.5%) had scores above the cut off score of 48, indicating that most relationships were perceived to not be in distress. With regard to dyad ic coping, for the total score of those who completed the DCI the mean caregiver score was 132.68 ( SD = 19.02) and the mean patient score was 137.48 ( SD = 15.51). Of those who completed the DCI, five caregivers (10.6%) and three patients (7.7%) had below average total scores ; thirty one caregivers ( 66.0 %) and twenty five patients (64.1%) reported score s with in the normal range ; and e leven caregiver s ( 23.4 %) and eleven patients (28.2%) appraised their dyadic coping as above average. With regard to the two study outcome variables with cut off scores BSI 18 scores indicated that f ive patients (10.6%) pre HSCT and five patients (10.4%) post HSCT had scores indicating clinically meaningful psychological d istres s O nly one patient had clinically elevated BSI 18 scores both pre and post HSCT Depression as assessed by the CES D, indicate d pre HSCT nine patients (19.1%), and post HSCT, fourteen patients (29.2%), had clinically significant levels of depression O nly six patients had clinically elevated CES D scores both pre and post HSCT Of the 33 patient scores that indicated clinically significant distress, only two patients had clinically elevated scores pre and post HSCT on both measures Bivariate Correlations In order to evaluate the relationship s between the predictor variables ( RS ; SSE total, instrumental, informational and emotional subscales ; and CDC ), bivariate correlations were

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29 conducted. Correlations among these variables were positively correlated as expected, but not so highly correlated to raise concern that they were measuring the same construct. Interestingly, reports within couples of the same constructs were only moderately correlated (RDAS RS r = .44, S S E Q Total r = .36, DCI CDC r = .51) suggesting some unique information was gained by assessing both partners. All correlations revealed that significant relationships were in the hypothesized direction. Additionally, the caregiver SSE Q (total) was significantly asso ciated with caregiver in formational ( r = .75 p < .01) and emotional ( r = .83 p < .01) subscales. The c aregiver SSE Q in formational and emotional subscale s were significantly associated ( r = 72 p < .0 1 ). Additionally, the p atient SSE Q in strumental subscale was significantly associated with the patient informational ( r = .76, p < .01) and emotional ( r = .78, p < .01 ) subscales. The patient SSE Q informational and emotional subscale s w ere significantly associated ( r = .80, p < .01 ). Lastly, patient SSE Q (total) was significantly associated with patient i nstrumental ( r = .87 p < .01) i nformational ( r = .91 p < .01) and emotional ( r = .85 p < .01) subscales. Overview of these correlational relationships can be found in Table 5. Table 5 Bivariate Correlations Between Predictor Variables CG RDAS RS PT RDAS RS CG SSE Q Total CG SSE Inst CG SSE Inf o. CG SSE Em o. PT SSE Q Total PT SSE Ins t. PT SSE Inf o. PT SSE Emo CG DCI CDC CG DCI CDC CG RDAS RS 1.00 PT RDAS RS .44** 1.00 CG SSE Q Total CG SSE Q Instrumental .50** .47** .38** .39** 1.00 .60** 1.00 CG SSE Q Informational .41* .31* .75** .62** 1.00 CG SSE Q Emotional .31* .22 .83** .44** .72** 1.00 PT SSE Q Total .24 .45** .36* .51** .42** .20 1.00

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30 Table 5 (cont.) PT SSE Q Instrumental .18 .36* .32* .42** .31* .22 .87** 1.00 PT SSE Q Informational .23 .45** .35* .46** .49** .23 .91** .76** 1.00 PT SSE Q Emotional .20 .36* .23 .47** .39** .08 .85** .78** .80** 1.00 CG DCI CDC .63** .29* .45* .48** .47** 43** .20 .10 .15 .24 1.00 PT DCI CDC .35* .42** .23 .23 .38** .25 .29* 1.97 .34* .34* .51** 1.00 p < .05 ** p < .01 (two tailed) Note: All participants completed each of these measures and the numbers are out of 48 couples. Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale); SSE Q = Social Support Effectiveness Questionnaire (Instrume ntal, Informational, Emotional Subscales); DCI CDC = Dyadic Coping Inventory (Common Dyadic Coping Subscale) Regarding correlations between predictors and patient distress, no caregiver predictors were significantly correlated with pre or post HSCT patient distress. T he only predictor s significantly correlated with pre HSCT distress (IES R) w ere patient SSE Q total ( r = .31, p < .05) and patient SSE Q instrumental ( r = .37, p < .05 ) Regarding post HSCT distress, patient SSE Q total was negatively correlated with BSI 18 ( r = .30, p < .05 ), IES R ( r = .35, p < .05 ), and CES D ( r = .39, p < .01 ). Patient SSE Q instrumental and informational subscale scores were negatively correlated with IES R ( r = .32, p < .05 ; r = .34, p < .05 ) and CES D ( r = .29, p < .05 ; r = .35, p < .05 ) and p atient SSE Q informational was negatively correlated with BSI 18 ( r = .31, p < .05) Patient DCI CDC was negatively correlated with post HSCT BSI 18 ( r = .30, p < .05). The significant correlations were all in the expected direction. Lastly, all three pre HSCT measures of distress correlated with each post HSCT measure of distress as expected. Overview of these correlational relationships can be found in Table 6 P otential covariates for use in the exploratory analyses were assessed with bivariate correlations. The demographic and medical variables that were significantly correlated with the post HSCT measures of distress, as well as patient diagnosis of depression, days post HSCT survey completion, and caregiver and patient PRCI were included as control variables

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31 in the exploratory analyses. Bivariate correlations of significant covariates are located in Table 6. Table 6 Bivariate C orrelations B etween P redictor V ariables Covariates and Patient D istress O utcomes Pre HSCT BSI 18 Pre HSCT IES R Pre HSCT CES D Post HSCT BSI 18 Post HSCT IES R Post HSCT CES D Predictors CG RDAS RS .0 6 .0 1 .2 2 .13 .18 .04 .1 7 .08 .20 .08 .08 .19 1.00 .67** .65** 18 .06 .30* .2 2 .2 4 .53** .29* .01 .0 9 .0 7 .0 4 .0 4 PT RDAS RS .00 .08 1 2 .1 1 15 CG SSE Q Total .0 2 .0 2 .0 4 .0 8 .22 CG SSE Instrumental CG SSE Informational CG SSE Emotional PT SSE Q Total .01 .10 .14 .3 1 .14 .01 .11 .2 7 .02 .10 .08 .30* .06 .07 .08 .35* .11 .13 .04 .39** PT SSE Instrumental PT SSE Informational PT SSE Emotional CG DCI CDC PT DCI CDC Pre HSCT BSI 18 .37* .27 .20 .19 .06 .67** .18 .23 .09 .20 .15 .65** .21 .31* .18 .05 .30* .52** .32* .34* .26 .16 .23 .55** .29* .35* .19 .03 2 6 .57** IES R 1.00 .69** .32* .57** .38** CES D Covariates CG Education CG Anxiety D x PT Education PT Anxiety Dx PT Depression Dx Psychosocial Risk Household Income .69** .0 7 .13 .15 27 41* 3 8 .35* 1.00 00 .05 .13 37 44 48* .20 .48** .29* .21 .24 .1 2 .1 1 .37* .11 .59** 14 .29* .17 .2 2 2 3 44 ** .1 9 .56** .2 5 .23 .24 .29* .01 3 2 .14 ** p < .01, p < .05 (two tailed) Note: N ranges from 44 48 Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale); SSE Q = Social Support Effectiveness Questionnaire (Instrumental, Informational, Emotional Subscales); DCI CDC = Dyadic Coping Inventory (Common Coping Subscale); BSI 18 = Brief Symptom Inventory 18 (Psychological Distress) ; IES R = Impact of Event Scale Revised (Transplant Specific Distress) ; CES D = Center for Epidemiological Studies Depression Scale (Depression) Test of Study Aims For Aims 1 3, a series of linear regressions were conducted to determine which pre HSCT constructs ( RS SSE and CDC ) separately predicted patient post HSCT distress

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32 (psychological distress, transplant specific distress, and depression), when controlling for patient pre HSCT distress Aim 1 Does pre HSCT RS predict post HSCT patient distress, when controlling for pre HSCT patient distress? Hypothesis 1.1. P re HSCT caregiver RS will be negatively associated with post HSCT patient distress C aregiver RDAS RS and the three measures of patient distress were used to test this hypothesis for a total of 3 separate regression analyses. Caregiver RS was not a significant predictor of post HSCT patient distress R egression coefficients are presented in Table 7 Hypothesis 1.2. P re HSCT patient RS will be negatively associated with post HSCT patient distress. P atient RDAS RS and the three measures of patient distress were used to test this hypothesis for a total of 3 separate regression analyses. Patient RS was not a significant predictor of post HSCT patient distress (Table 7) Table 7 Summary of R egression A nalysis for C aregiver and P atient R elationship S atisfaction P redicting P ost T ransplant Patient Ps ychosocial D istress Outcome Variable Variables B SE B T P R F p P ost HSCT BSI 18 CG Predictor Model 1 .27 8.14 .00 Control: Pr e BSI 18 .52 .13 .52 4.00 .00 CG RDAS RS .19 .68 .04 .27 .79 PT Predicto r Model 1 .28 8.70 .00 Control: Pre BSI 18 .52 .13 .52 4.06 .00 PT RDAS RS .72 .77 .12 .94 .35 Post HSCT IES R CG Predictor Model 1 .33 10.74 .00 Control: Pre IES R .38 .08 .57 4.62 .00 CG RDAS RS .18 .59 .04 .31 .76 PT Predictor Model 1 .34 11.28 .00 Control: Pre IES R .38 .08 .57 4.67 .00 PT RDAS RS .60 .66 .11 .91 .37

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33 Table 7 (cont.) Post HSCT CES D CG Predictor Model 1 .32 10.52 .00 Control: Pre CES D .50 .11 .57 4.57 .00 CG RDAS RS .37 .49 .09 .75 .46 PT Predictor Model 1 .35 11.91 .00 Control: Pre CES D .51 .11 .58 4.74 .00 PT RDAS RS .87 .54 .19 11.57 .12 p < .0 5 Note: N = 48 Note: CG = Caregiver; PT = Patient; RDAS RS = Revised Dyadic Adjustment Scale (Satisfaction Subscale); BSI 18 = Brief Symptom Inventory 18 (Psychological Distress) ; IES R = Impact of Event Scale Revised (Transplant Specific Distress) ; CES D = Center for Epidemiological Studies Depression Scale (Depression) Aim 2. Does pre HSCT perceived SSE predict post HSCT patient distress, when controlling for pre HSCT patient distress? Hypothesis 2.1. P re HSCT caregiver SSE will be negatively associated with post HSCT patient distress. Four measures of caregiver SSE and the three measures of patient distress were used to test this hypothesis for a total of 12 separate regression analyses. A significant association was found between SSE Q (total) and post HSCT patient depression (CES D) Specific ally, caregiver SSE Q (tot al) negatively predicted depression ( = .24, p < .01) as hypothesized. No other measures of caregiver SSE were predictive of any of the patient distress measures Regression coefficients are presented in Table 8 Hypothesis 2.2. P re HSCT patient SSE will be negatively associated with post HSCT patient distress. Four measures of patient SSE and the three measures of patient distress were used to test this hypothesis, for a total of 12 separate regression analyses. A significant association was fou nd between SSE Q (total) and post HSCT patient depression (CES D) Specific ally, patient perceived SSE Q ( total ) negatively predicted patient depression ( = .25, p < .01), as hypothesized. No other measures of patient SSE were predictive of any of the patient distress measures (Table 8)

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34 Table 8. Summary of R egression A nalysis for C aregiver and P atient Social S upport E ffectiveness P redicting P ost T ransplant Patient P sychosocial D istress Outcome Variable Variable B SE B t P R F P Post HSCT BSI 18 Model 1 .27 8.12 .00 Control: Pre BSI 18 .52 .13 .51 3.88 .00 CG CG SSE Q Total .04 .16 .03 .24 .81 Predictors Model 1 .27 8.17 .00 Control: Pre BSI 18 .53 .13 .52 4.04 .00 CG SSE Instrumental .19 .55 .04 .34 .73 Model 1 .27 8.09 .00 Control: Pre BSI 18 .52 .13 .52 3.95 .00 CG SSE Informational .04 .54 .01 .07 .94 Model 1 .28 8.59 .00 Control: Pre BSI 18 .53 .13 .52 4.08 .00 CG SSE Emotional .44 .51 .11 .86 .39 PT Model 1 .27 8.12 .00 Predictors Control: Pre BSI 18 .35 .09 .51 3.88 .00 PT SSE Q Total .02 .09 .03 .24 .81 Model 1 .30 9.33 .00 Control: Pre BSI 18 .51 .13 .50 4.04 .00 PT SSE Instrumental .64 .47 .17 1.35 .18 Model 1 .32 10.11 .00 Control: Pre BSI 18 .48 .13 .48 3.73 .00 PT SSE Informational .78 .45 .22 .72 .09 Model 1 .29 8.90 .00 Control: Pre BSI 18 .51 .13 .51 3.98 .00 PT SSE Emotional .43 .39 .14 1.90 .28 Post HSCT IES R Model 1 .33 10.84 .00 Control: Pre IES R .38 .08 .57 4.59 .00 CG CG SSE Q Total .06 .13 .06 .48 .63 Predictors Model 1 .33 10.88 .00 Control: Pre IES R .38 .08 .57 4.63 .00 CG SSE Instrumental .26 .48 .07 .53 .60 Model 1 .33 10.67 .00 Control: Pre IES R .38 .08 .57 4.59 .00 CG SSE Informational .04 .45 .01 .10 .92 Model 1 .33 10.67 .00 Control: Pre IES R .38 .08 .57 4.59 .00 CG SSE Emotional .01 .42 .00 .03 .98 PT Model 1 .36 12.26 .00 Predictors Control: Pre IES R .34 .09 .51 4.06 .00 PT SSE Q Total .17 .12 .19 1.47 .15 Model 1 .34 11.25 .00 Control: Pre IES R .35 .09 .53 4.00 .00 PT SSE Instrumental .40 .45 .12 .89 .38 Model 1 .37 12.62 .00 Control: Pre IES R .35 .08 .52 4.15 .00 PT SSE Informational .66 .40 .20 1.63 .11

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35 Table 8 (cont.) Model 1 .35 11.72 .00 Control: Pre IES R .36 .08 .54 4.36 .00 PT SSE Emotional .42 .35 .15 1.19 .24 Post HSCT CES D Model .37 13.09 .00 Control: Pre CES D .50 .11 .57 4.73 .00 CG CG SSE Q Total .21 .11 .24 2.02 .05* Predictors Model 1 .35 11.88 .00 Control: Pre CES D .50 .11 .59 4.79 .00 CG SSE Instrumental .61 .39 .19 1.56 .13 Model 1 .34 11.23 .00 Control: Pre CES D .50 .11 .56 4.59 .00 CG SSE Informational .47 .38 .15 1.23 .22 Model 1 .33 10.80 .00 Control: Pre CES D .51 .11 .57 4.62 .00 CG SSE Emotional .36 .37 .12 .97 .34 PT Model 1 .38 13.20 .00 Predictors Control: Pre CES D 44 .11 .49 3.99 .00 PT SSE Q Total .19 .09 .25 2.06 .05* Model 1 .35 11.98 .00 Control: Pre CES D .47 .11 .53 4.27 .00 PT SSE Instrumental .55 .35 .20 1.60 .12 Model 1 .37 12.86 .00 Control: Pre CES D .45 .11 .51 4.13 .00 PT SSE Informational .64 .33 .24 1.94 .06 Model 1 .34 11.10 .00 Control: Pre CES D .49 .11 .55 4.45 .00 PT SSE Emotional .33 .29 .14 1.15 .26 p < .05 Note: N = 48 Note: CG = Caregiver; PT = Patient; SSE Q = Social Support Effectiveness Questionnaire (Instrumental, Informational, Emotional Subscales); BSI 18 = Brief Symptom Inventory 18 (Psychological Distress) ; IES R = Impact of Event Scale Revised (Transplant Specific Distress) ; CES D = Center for Epidemiological Studies Depression Scale (Depression) Aim 3. Does pre HSCT CDC predict post HSCT patient distress, when controlling for pre HSCT patient distress? Hypothesis 3.1. P re HSCT caregiver CDC will be negatively associated with post HSCT patient distress. C aregiver DCI CDC and the three measures of patient distress were used to test this hypothesis, for a total of 3 separate regression analyses. Caregiver CDC was not a significant predictor of post HSCT patient distress R egression coefficients are presented in Table 9

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36 Hypothes is 3.2. P re HSCT patient CDC will be negatively associated with post HSCT patient distress. Patient DCI CDC and the three measures of patient distress were used to test this hypothesis, for a total of 3 separate regression analyses. A significant association was found between patient DCI CDC and patient post HSCT transplant specific distress (IES R). Specific ally, patie nt CDC negatively predicted patient transplant specific distress ( = .27, p < .01), as hypothesized (Table 9) Table 9 Summary of R egression A nalysis for C aregiver and P atient Common D yadic C oping P redicting P ost T ransplant Patient P sychosocial D istress Outcome Variable Variable B SE B t P R F p Post HSCT BSI 18 CG Model 1 .27 8.09 .00 Predictor Control: Pre BSI 18 .36 .09 .52 4.00 .00 CG DCI CDC .01 .17 .01 .06 .96 PT Model 1 .31 9.95 .00 Predictor Control: Pre BSI 18 .48 .13 .48 3.76 .00 PT DCI CDC .54 .33 .21 1.65 .11 Post HSCT IES R CG Model 1 .33 10.81 .00 Predictor Control: Pre IES R .38 .08 .56 4.46 .00 CG DCI CDC .11 .25 .06 .44 .67 PT Model 1 .40 14.65 .00 Predictor Control: Pre IES R .39 .08 .59 5.03 .00 PT DCI CDC .63 .27 .27 .23 .03* Post HSCT CES D CG Model 1 .32 10.52 .00 Predictor Control: Pre CES D .51 .11 .58 4.58 .00 CG DCI CDC .15 .21 .09 .75 .46 P T Model 1 .35 11.80 .00 Predictor Control: Pre CES D .47 .11 .53 4.33 .00 PT DCI CDC .36 .24 .19 1.52 .14 p < .0 5 Note: N = 48 Note: CG = Caregiver; PT = Patient; DCI CDC = Dyadic Coping Inventory (Common Coping Subscale); BSI 18 = Brief Symptom Inventory 18 (Psychological Distress) ; IES R = Impact of Event Scale Revised (Transplant Specific Distress) ; CES D = Center for Epidemiological Studies Depression Scale (Depression) Summary of Aims 1 3 An updated conceptual model (Figure 3 ) reflects the significant predictors and outcomes, based on the findings from aims 1 3 Findings revealed:

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37 Aim 1) n either caregiv er or patient RDAS RS scores were predict ive of post HSCT patient distress Aim 2) b oth c aregiver and patient SSE Q (total) scores were predictive of post HSCT depression, and Aim 3) o nly patient DCI CDC scores w ere predictive of post HSCT patient transplant specific distress Figure 3 Secondary Conceptual Model of Dyadic Predictors of HSCT Patient Psychosocial Distress Aim 4. (Exploratory) 4 .1 Test multivariate models with the significant predictors from Aims 1 3 to evaluate which variables best predict post HSCT patient distress. This analysis assessed the relationship between SSE Q scores (total) and CES D scores when controlling for pre HSCT and identified covariates (see Table 10) to see what was predictive of post HSCT patient CES D Sixty three percent of the variance in CES D w as explained by this model. Patient anxiety diagnosis, patient depression diagnosis, and patient pre HSCT CES D were predictive of post HSCT CES D ( = .08 p < .05; = .61 p < .001 ; = .52 p < .01, respectively ) Of primary interest, higher patient SSE w as significantly associated with lower CES D scores ( = .31 p < .05) Regression coefficients are located in Table 10. Caregiver Perceived Social Support Effectiveness Patient Common Dyadic Coping Patient Depression !!! Aim 1 Patient Perceived Social Support Effectiveness Patient Transplant-Specific Distress !!! Aim 2 Aim 3

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38 Table 10. Summary of Multiple Regression Analysis for Social Support Effectiveness Predicting Patient Post Transplant Patient Depression (CES D) Outcome Variable Variable B SE B t P R F P Post HSCT Model 1 6 3 6.19 .00 CES D PT Anxiety D x 5.16 2.55 .08 25 05 PT Depression D x Psychosocial Risk Pre HSCT CES D Days Post HSCT SurveyC CG PRCI PT PRCI CG SSE Q Total PT SSE Q Total 14.51 50 .54 .06 1.42 5.49 .1 0 .24 3.48 .33 .12 .05 2.91 2.92 .11 .11 .61 21 .52 .15 .06 .2 9 .11 31 4.16 1.51 3.76 1.22 .49 1.88 .90 2 17 .00 *** .14 .00 ** .23 63 07 37 04 p < .05, ** p < .01, *** p < .001 Note: N = 42 Note: CG = Caregiver; PT = Patient; CES D = Center for Epidemiological Studies Depression Scale (Depression) ; PRCI = Partner Responses to Cancer Inventory (Quantity of SSE) ; SSE Q = Social Support Effectiveness Questionnaire This analysis assessed the relationship between DCI CDC scores and IES R scores when controlling for pre HSCT IES R and identified covariates ( See Table 1 1 ) to see what was predictive of post HSCT patient IES R Fifty nine percent of the variance in IES R was explained by this model. Caregiver anxiety diagnosis and patient p re HSCT IES R were predictive of post HSCT patient IES R ( = .31 p < .05; = 42 p < .0 1 respectively). Of primary interest, higher patient CDC was significantly associated with lower IES R scores ( = 4 5 p < .0 1 ) Regression coefficients are located in Table 1 1 Table 1 1 Summary of Multiple Regression Analysis for Co mmon Dyadic Coping Predicting Post Transplant Patient Transplant Specific Distress (IES R) Outcome Variable Variable B SE B t P R F P Post HSCT Model 1 59 5. 91 .00 IES R CG Anxiety Dx 7. 55 3. 1 7 31 2. 38 .0 3 Psychosocial Risk Pre HSCT IES R Days Post HSCT SurveyC CG PRCI PT PRCI 60 29 .02 2.94 .10 45 09 .07 3. 65 3. 62 21 42 03 .11 00 1.34 3.06 .23 .80 03 19 .00** .82 43 98

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39 Table 11 (cont.) CG DCI CDC PT DCI CDC .5 4 1.0 5 .2 8 .3 6 .27 .45 1.96 2.94 06 .01** p < .05, ** p < .01 Note: N = 4 1 Note: CG = Caregiver; PT = Patient; IES R = Impact of Event Scale Revised (Transplant Specific D istress) ; PRCI = Partner Responses to Cancer Inventory (Quantity of SSE) ; DCI CDC = Dyadic Coping Inventory (Common Dyadic Coping Subscale) 4 .2. Test a multivariate model to evaluate if caregiver or patient perceived quality of support predicts post HSCT patient psychosocial distress, above and beyond perceived quantity of support provided. In an attempt to replicate findings from Rini et al. (2011), which found that perceived quality of SSE was predictive of psychological distress above and beyond perceived quan tity of support (PRCI) three separate hierarchical linear regressions were conducted. Only the models with significant findings are reported here. In the fir st hierarchical linear model, in the first step demographic and medical variables pre HSCT patient BSI 18, and days post HSCT survey completion account ed for 3 0 % of the variance in post HSCT BSI 18 scores ( R = 0.3 0 F ( 4 3 8 ) = 3 98 p < 0.0 1 ). Adding caregiver and patient PRCI scores (step 2) and caregiver SSE scores (step 3 ) did not significantly improve the prediction ( R change = 0.0 1 F ( 6 3 6 ) = 37 p < 0.6 9 ; R change = 0.01, F ( 7 3 5 ) = 55 p < 0. 46 ) Finally, in step 4 when SSE Q (total) patient score was added to the model this significantly improved the prediction ( R change = 0. 08 F ( 8 32 4 ) = 4.66 p < 0.0 4 ), accounting for 4 0 % of the variance in post HSCT patient BSI 18 scores In the final model, pre HSCT patient SSE was significantly associated with post HSCT patient BSI 18 ( = 36 p < .0 4 ). Regression coefficients are located in Table 1 2

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40 Table 1 2 Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social Support Effectiveness Predicting Post Transplant Patient Psychological Distress (BSI 18) Step 1 Step2 Step 3 Step 4 Variable B SEB B SEB B SEB B SEB CG Education 5 15 4. 12 1 8 5 01 4 25 .1 8 5 43 4 31 1 9 6 06 4 11 21 Psychosocial Risk Pre HSCT BSI 18 Days Post SurvC .12 .43 05 .52 .16 07 .04 .44 1 0 .13 .44 03 .55 .17 08 .04 .45* 06 .15 .42 02 .55 .17 08 .05 .42* 04 .04 .39 .02 .53 .16 08 .0 1 .40* 0 4 CG PRCI 4 4 4.70 11 3.94 4.83 14 4.34 4.60 .15 PT PRCI 0 2 4.28 .0 3 .43 4.31 .02 4.54 4.52 .18 CG SSE Q Total .13 .17 1 1 .01 .18 01 PT SSE Q Total .37 .17 3 6 F for Step 3 98 37 55 4.66 R for Step .3 0 .0 1 .01 08 F for Full Model 2. 86 R for Full Model .4 0 p < .05 Note: N = 4 2 Note: CG = Caregiver; PT = Patient; Brief Symptom Inventory 18 (Psychological Distress) ; PRCI = Partner Responses to Cancer Inventory (Quantity of SSE) ; SSE Q = Social Support Effectiveness Questionnaire In the second hierarchical linear regression, i n the first step demographic and medical variables pre HSCT patient CES D, and days post HSCT survey completion accounted for 51 % of the variance in post HSCT patient CES D scores ( R = 0. 51 F (5, 37 ) = 7.60 p < 0.00 ). Adding caregiver and patient PRCI scores (step 2) and caregiver SSE scores (step 3) did not significantly improve the prediction ( R change = 0.02 F (2, 35 ) = 73 p < 0.4 9 ; R change = 0.05 F (1, 34 ) = 3.89 p < 0.06 ) Finally, in step 4 when SSE Q (total) patient score was added to the model this significantly improved the prediction ( R change = 0.05, F (1, 35) = 4.72, p < 0.04 ), accounting for 6 3% of the variance in post HSCT patient CES D scores In the final model, pre HSCT patient SSE was significantly associated with post HSCT patient CES D ( = .31, p < .04). Regression coefficients are located in Table 13. Table 1 3 Summary of Hierarchical Linear Regression Analysis of Caregiver and Patient Social Support Effectiveness Scores Predic ting Post Transplant Patient Depression (CES D) Step 1 Step2 Step 3 Step 4 Variable B SEB B SEB B SEB B SEB PT Anx D x 4.97 2.75 .24 5.03 2.80 .24 5.34 2.69 .26 6.16 2.55 .25 PT Depr. Dx 13.47 3.59 57** 14.57 3.77 .61*** 13.74 3.65 .58** 14.51 3.48 .61***

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41 Table 13 (cont.) Psycho. Risk .56 .34 .24 .48 .36 .20 .44 .34 .19 .50 .33 .21 P re CESD .52 .12 .60*** .53 .13 .62*** .53 .12 .61*** .45 .12 .52** Day P SurvC .01 .05 .01 .01 .05 .03 .03 .05 .07 .06 .05 .15 CG PRCI .24 3.11 .01 1.01 3.06 .05 1.42 2.91 .06 PT PRCI 3.12 2.87 .16 2.70 2.76 .14 5.49 2.92 .29 CG SSE Q Total .21 .11 .23 .10 .11 .11 PT SSE Q Total .23 .11 .31* F Step 7.60*** .73 3.89 4.72* R Step .51 .02 .05 .05 F Full Model 6.19*** R Full Model .63 p < .05, ** p < .01, *** p < .001 Note: N = 4 2 Note: CG = Caregiver; PT = Patient; CES D = Center for Epidemiological Studies Depression Scale (Depression) ; PRCI = Partner Responses to Cancer Inventory (Quantity of SSE) ; SSE Q = Social Support Effectiveness Questionnaire

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42 CHAPTER IV DISCUSSION Overview Undergoing hematopoietic stem cell transplantation (HSCT) is a physically and psychologically taxing medical event that can significantly impact patients and their caregivers. The primary goal of this longitudinal study was to increase understanding of relationship variables of romantic par tnered dyads and to determine the characteristics that best predicted distress in patients who recently underwent HSCT. The study hypothesized that higher levels of relationship satisfaction (RS), perceived social support effectiveness (SSE), and common dy adic coping (CDC), would be associated with lower levels of post HSCT patient distress. Several of the study hypotheses were supported suggesting that relationship characteristics may be associated with post HSCT patient psychosocial outcomes. Discussion of Results Related to Study Aims Summary of Significant Findings Findings revealed that higher caregiver and patient perceived support effectiveness (SSE) were significant predictors of lower post HSCT patient depression (CES D), when controlling for pre HSCT patient depression Furthermore, patient perception of SSE was predictive of psychological distress (BSI 18) and CES D above and beyond both perceived quantity of time of support provided (PRCI) and caregiver SSE such that higher patient SSE predicte d lower post HSCT patient BSI 18 and CES D scores. Lastly, it was found that higher patient CDC was predictive of lower post HSCT patient transplant specific distress (IES R) when controlling for pre HSCT patient transplant specific distress. Relationship Satisfaction Contrary to what was hypothesized, neither caregiver nor

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43 patient relationship satisfaction predicted post HSCT patient distress. However, these results are not entirely unexpected considering that the majority of caregivers (76.1%) and patie nts (74.5%) reported low levels of relationship distress and high levels of relationship satisfaction leading to a lack of variability in these scores. This could be a function of the couples who agreed to participate in this study given the study was adve rtised as a study of relationship satisfaction. Interestingly, other HSCT dyad studies investigating relationship satisfaction (Langer et al., 2003; Langer et al., 2009; Langer et al., 2010) also reported high patient and caregiver RS pre HSCT, and these s tudies also found patient RS scores remain ed stable over time, while caregiver RS decreased over time ( Langer et al., 2003), especially for female caregivers ( Langer et al., 2010). Social Support Effectiveness. The findings from this prospective dyadic di ssertation study expand upon the retrospective study of HSCT survivors 1 3 years post HSCT by Rini et al. (2011), in which patient reported SSE was negatively associated with psychological distress (BSI Full Measure). Rini and colleagues found that quantity of partner support was not associated with distress and an interaction revealed that when social support was perceived as effective, the quantity of support survivors received was not significantly associated with distress. Interestingly in this dissertation, both higher caregiver and patient SSE were predict ive of lower post HSCT patient CES D specific ally Furthermore, higher pre HSCT patient SSE was predictive of lower post HSCT patient distress (BSI 18 and CES D) above and beyond caregiver and patient perceived quantity of support provided and caregiver SSE It was anticipated that findings from this dissertation could also highlight specific domains of SSE (instrumental, informational, or emotional) predictive of patient distress. In

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44 bivariat e correlation analyses, instrumental and informational domains had significant negative correlations with IES R and CES D, and the instrumental domain was significantly negatively correlated with BSI 18. This suggests the potential importance of targeting specific components of social support in psychosocial intervention s with this population This study add resses several of the weaknesses of previous HSCT social support studies as highlighted in a systematic review by Beattie et al. (2013). Some of the pr evious weaknesses that were addressed in this study included: 1) the use of a prospective design, 2) assessment of both quantity versus quality of support, 3) investigation into the specific types of support (instrumental, informational, emotional) and 4) patient and caregiver reports of social support Common Dyadic Coping. This study did not find a significant relationship between caregiver CDC and post HSCT patient distress on any of the distress measures. This was contrary to what was hypothesized and also different from previous studies of communal coping, assessed through conjoint interview, in which caregiver we talk was associated with improved patient outcomes in heart transplant (Rohrbaugh et al., 2008), and higher dyadic adjustment and lower depressive symptoms in breast cancer patients (Robbins et al., 2013). However, the qualitative interview methodology us ed in these two studies was quite distinct from the current study, which makes it challenging to compare results. This dissertation study found that patient CDC was not predictive of post HSCT BSI 18 or CES D when controlling for pre HSCT distress. Howev er, higher patient CDC was associated with lower post HSCT patient IES R. Furthermore, when controlling not only for pre HSCT IES R, but for covariates identified in correlational analyses, caregiver diagnosis of anxiety was associated with post HSCT patie nt IES R. These results are similar to

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45 findings in other literature demonstrating that caregivers of patients undergoing HSCT can experience high levels of psychosocial distress ( Molassiotis et al., 2011) and that there is a signicant bidirectional relationship between HSCT patient and caregiver psychological distress (Hodges, Humphris, & Macfarlane, 2005). Badr et al. (2010), who assessed couples facing metastatic breast cancer found that CDC was associated with lower IES R for caregivers and slightly higher IES R for patients. Although the results differ in each of our studies, the dissertation study further highlights what Badr et al. (2010) suggested, which was that addressing distress assoc iated with the event specific ally (i.e. transplant or cancer) through the IES R may be a more appropriate target for intervention than general distress. Future Research Directions The goal of the current study was to increase understanding regarding care giver patient relationship factors and their ability to predict post HSCT patient distress. Regarding RS, b ased on the findings from this dissertation and other HSCT studies, it appears that RS may be relatively stable over time for patients However, identifying couples who specific ally have lower RS pre HSCT or having a stronger focus on caregiver RS may be an important focus of future research. Regarding dyadic coping, other oncology studies have investigated the relative contribution of other subsca les of the Dyadic Coping Inventory aside from CDC (Badr et al., 2010; Regan et al., 2014) Thus, future investigations in HSCT caregivers and patients may also benefit from looking at other dyadic coping subscales that assess other qualities of dyadic copi ng Furthermore, future studies of the constructs evaluated in this stud y, which includ e assessment of pre and post HSCT caregiver distress and its association with dyad specific factors would be valuable as many studies highlight the

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46 significant distress caregivers of patients undergoing HSCT experience ( Kim, Carver, Rocha Lima, & Schaffer, 2011; Soothill, Morris, Thomas, Harman, Francis, McIllmurray, 2003 ; Siston et al., 2001 ). A primary goal for future research is to explore the interrelatedness of the predictors investigated in this study. Correlational analyses in this dissertation and recent literature highlight that the constructs appear to significantly impact one another. For examp le, RS was utilized as a predictor of dyadic coping in a study of partners and patients with prostate cancer (Regan et al., 2014), and RS was found to be significantly associated with patient and spouse use of positive and negative dyadic coping. Furthermo re, Manne et al. ( 2005) found that perception of support might be as important as the dyadic coping behavior itself. Badr et al. (2010) also found that higher levels of CDC were associated with higher levels of caregiver and patient dyadic adjustment Furthermore, a recent systematic review of dyadic coping and relationship functioning in couples coping with cancer by Traa et al. (2015) highlighted that "a metatheory linking different dyadic coping approaches with social support models in couples is nee ded. It would also be valuable to explore dyadic relationship factors in expanded populations. This could include allogeneic transplant patients, other oncology and chronic illness populations, and solid organ transplant patients and their caregivers. Som e of these populations, solid organ transplant patients in particular, generally require a designated caregiver and undergo an extensive post transplant process. Furthermore, in addition to psychosocial distress, it would be beneficial to assess if the pre dictors from this study are associated with other health related outcomes including morbidity and mortality rates. For example, in the social support literature, Frick et al. (2005) used the Illness Specific Scales of

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47 Social Support with autologous HSCT pa tients, and found that patients who had high problematic social support subscale scores had poorer survival rates. Clinical Implications There are several valuable clinical implications of this study that highlight the potential importance of: 1) enhanced psychosocial screening to identify at risk dyads who may have a mismatch in support provided versus support that is perceived as effective or who have highly individualistic coping styles and 2) pre HSCT dyadic interventions aimed at enhancing pe rceived SSE and CDC in dyads reporting high levels of distress. Specific interventions aimed at improving SSE and CDC in at risk dyads have not be formally developed, but a potential framework for HSCT dyadic interventions could come from Couple's Coping E nhancement Training (CCET) and Coping Oriented Couples Therapy (COCT) (Bodenmann & Randall, 2012; Bodenmann & Shantinath, 2004). CCET and COCT are d erived from couple's stress and coping research T hese phased interventions focus on skills such as enhancing awareness and sensitivity to each other's stress, enhancing communication to respond to stress, strengthening mutual problem solving, and providing feedback on the effectiveness of the support. Randomized controlled trials comparing COCT to cognitive behavioral therapy and interpersonal therapy demonstrated COCT is associated with greater RS and intimacy, positive communication, more frequent dyadic coping (Bodenmann, Pihet, Shantinath, Cina & Widmer, 2006), and better dyad psychological well being (Pihet, Bodenmann, Cina, Widme & Shantinath, 2007). To date, no scientific literature describing or testing this therapy in medical settings was found; however, it appears abbreviated elements could be leveraged for dyads undergoing HSCT.

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48 Cur rently, within transplant programs such as the Colorado Blood Cancer Institute (CBCI) and the Blood Cancer and Hematological Malignancies and BMT Program at the University of Colorado Hospital (UCH) pre HSCT psychosocial intakes are conducted, in which va luable information is gained about the perceived quality of intimate partner relationships and the perception of one's overall support system. This step in the pre HSCT psychosocial team evaluation could be extended to include more detailed interview quest ions or utilization of specific measures assessing the constructs of SSE or CDC to more clearly understand a couple's dyadic functioning. Furthermore these concepts could be addressed in the pre HSCT caregiver course, and more specific ally with at risk dy ads through more focused individual and couples therapy (as described above), or within group interventions. Limitations There were several limitations of this study. First, having only 48 couples may have impacted the ability to detect significant relationships b etween some of the variables due to a lack of power. Estimates and standard errors suggest that a larger sample size could have aided in detecting significance. The study was also underpowered to investigate possible interactions. Although significant associations were identified f uture research should attempt to replicate these findings in a larger study population. Other limitations included the high potential for type I error associated with the numerous individual regressions that were conducted. However, these regressions did control for pre HSCT distress and knowing that the outcomes were associated with pre HSCT distress is valuable for future intervention development. Like many studies of this type, there was a potential for selec tion bias given that not all couples undergoing HSCT agreed to participate in the study. As mentioned earlier, the

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49 majority of couples who agreed to participate in this study did not report relationship distress and had low psychosocial risk scores Those who chose not to participate may have experienced more distress within their relationships. Furthermore, o f those who did not participate, a higher percentage of patients had moderate (18.8%) or high (4.7%) psychosocial risk. Therefore, the sample may not be representative of all autologous HSCT patients and their partnered caregivers. Additionally, b ecause this study focused on partnered dyads, the results cannot be generalized to other relationships such as family members or friends who serve as caregivers. Furthermore, the results are not generalizable to allogeneic transplant patients, as they undergo different treatment trajectories that involve higher risk The sample was also mainly Caucasian, male patients with high inco me and education levels which is consistent with other published literature on HSCT samples (Langer et al., 2009; Langer et al., 2010; Rini et al., 2011); however, future efforts enhancing recruit ment of more diverse sample s would be a valuable endeavor The range of cancer treatment histories (e.g., time since diagnosis, treatments received etc.) may have impacted the outcomes examined in this study. Patients who had been recently diagnosed could have had high er levels of distress as a result of the relatively recent medical news. Conversely, patients coping with their illness for longer periods of time may have had more time to adapt to the stress of their illness, reporting less distress. Additionally, it was n ot possible to control for number of visits or time spent with a psychosocial team member over the course of the transplant process. Patients who received more support from the psychosocial team may have had decreased distress. This information would be va luable to collect in future studies as it may impact distress levels. Lastly, the likely impact that caregiver distress w ould have on patient distress was not fully accounted

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50 for in this study ; however, caregiver self reported mental health diagnoses that were significantly correlated with post HSCT distress, were controlled for in the exploratory analyses. Conclusion By assessing partnered dyads in which one person was undergoing autologous HSCT this study enhanced our understanding of pre HSCT support and relationship factors unique to the partnered dyad and their impact on post HSCT patient distress T his study is the first study in a n HSCT population to: 1) evaluate relationship satisfaction as a predictor of post HSCT patient distress, 2) evaluate the influence of perceived social support effectiveness prospectively using dyadic data with the couple as the unit of analys i s, and finally, 3) evaluate the construct of common dyadic coping This study lays the groundwork for contin ued evaluation of relationship factors that may impact HSCT patient outcomes. Specific ally, perceived social support effectiveness above and beyond quantity of support a s well as the potential benefits of common dyadic coping should be a continued focus o f future research to inform dyadic psychosocial interventions at critical stages of HSCT

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59 Syrjala, K. L., Langer, S. L., Abrams, J. R., Storer, B., Sanders, J. E., Flowers, M. E., & Martin, P. J. (2004). Recovery and long term function after hematopoietic cell transplantation for leukemia or lymphoma. Journal of the American Medical Association 291 (19), 2335 2343. Tecchio, C., Bonetto, C., Bertani, M., Cristofalo, D., Lasalvia, A. Nichele, I., ... & Pizzolo, G. (2013). Predictors of anxiety and depression in hematopoietic stem cell transplant patients during protective isolation. Psycho Oncology 22 (8), 1790 1797. Traa, M. J., De Vries, J., Bodenmann, G., & Den Oudsten, B. L. (2015). Dyadic coping and relationship functioning in couples coping with cancer: A systematic review. British Journal of Health Psychology 20 (1), 85 114. U.S. Department of Health and Human Services: Health Resources and Services Adm inistration, Blood Cell Transplant, U.S. Patient Survival Report. Retrieved February 24, 2016, from http://bloodcell.transplant.hrsa.gov/RESEARCH/Transplant_Data/US_Tx_Data/Survi val_Data/survival.aspx U.S. Department of Health and Human Services: National Institutes of Health, National Cancer Institute (2014). Retrieved August 22, 2014, from http://www.cancer.gov/cancertopics/factsheet/Therapy/bone marrow transplant Weiss, D., & Marmar, C. (1997). The Impact of Event Scale Revised. In J. Wilson & T. Keane (Eds), Assessing psychological trauma and PTSD. New York: Guildford. Wettergren, L., Langius, A., Bjšrkholm, M., & Bjšrvell, H. (1997). Physical and psychosocial functioning in patients undergoing autologous bone marrow transplantation -a prospective study. Bone Marrow Transplantation 20 (6), 497 502. Wingard, J. R., Curbow, B., Baker, F., & Piantadosi, S. (1991). Health, functional status, and employment of adult survivors of bone marrow transplantation. Annals of Internal Medicine 114 (2), 113 118. Wulff Burchfield, E.M., Jagasia, M., & Savani, B.N. (2013). Long term follow up of informal caregivers after allo SC T: A systematic review. Bone Marrow Transplantation 48 (4), 469 473.

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60 APPENDIX A STUDY RECRUITMENT FLYER CBCI Patient/Caregiver Autologous Transplant Study Information Sheet Patient caregiver relationships, social support, coping style and psychosocial distress Why is this study being done? There is limited research examining the relationship between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study is designed to inform mo re about patient caregiver relationships, social support, coping styles and patient psychosocial distress. What will I be asked to do if I join this study? You and your partner will both be asked to fill out a survey before the transplant about your rel ationship, social support needs, coping style and your physical and mental well being. This survey will take about 45 60 to complete. If you are a patient at CBCI, you will also fill out a second, shorter survey approximately one month after transplant. T his survey will take about 15 20 minutes to complete. You may withdraw at any time during the study. If you would like more information or are interested in participating in this study, please: Inform someone on your psychosocial team at CBCI or Contact: Jessica Geller, M.S. Phone: 720.754.6429 or Email: jessica.geller@ucdenver.edu

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61 APPENDIX B STUDY RECRUITMENT FLYER UCH Patient/Caregiver Autologous Transplant Study Information Sheet Patient caregiver relationships, social support, coping style and psychosocial distress Why is this study being done? There is limited research examining the relationship between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study is designed to inform more about patient caregiver relationships, social support, coping styles and patient psychosocial distress. What will I be asked to do if I join this study? You and your partner will both be asked to fill out a survey before the transplant about your relationship, social support needs, coping style and your physical and mental well being. This survey will take about 45 60 to complete. If you are a patient at the Hematologic Malignancies and BMT Program at the Universit y of Colorado Hospital you will also fill out a second, shorter survey approximately one month after transplant. This survey will take about 15 20 minutes to complete. You may withdraw at any time during the study. If you would like more information or are interested in participating in this study, please: Inform someone on your psychosocial team Contact: Jessica Geller, M.S. Phone: 303.476.8165 or Email: jessica.geller@ucdenver.edu

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62 APPENDIX C PATIENT CONSENT FORM CBCI PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous Hematopoietic Stem Cell Transplant (HSCT) INVESTIGATOR: Dr. Andrea Maikovich Fong (720 754 4855) SITE: Colorado Blood Cancer Institute, Presbyterian/St. Luke's Me dica l Center/Colorado Blood Cancer Institute 1721 East 19 th Avenue, Suite 300 Denver, Colorado 80218 720 754 4800 Introduction You are being asked to participate in a research study. Please read the information below, which provides you with information about the study. A member of the research team will also describe the study to you and can answer questions about anything you don't understand before you decide whether or not to take part in the study. Why is t his study being done? There is limited research examining the relationsip between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study plans to learn more about patient caregiver relationships social support, and coping styles and patient psychosocial distress. Why are you being asked to participate in this study? You are being asked to participate in this research study because you are 18 years of age or older and are undergoing an autologous hematopoetic stem cell transplant. Other people in this study Up to 70 couples (patients undergoing an autologous transplant and their caregivers) will be contacted to enroll in this research study. What happens if I join this study? If you join the study, you will be asked to fill out two surveys, which will ask some questions about your general physical and mental well being. This survey will also have questions about your relationship with your partner, social support received, and coping style. This survey will take approximately 45 60 minutes to complete. You will fill it out within the weeks prior to your transaplant. You will fill out a second, shorter survey about one month after your transplant that will take approximately 15 20 min utes to complete. Study participation will only be during these two time points. You may withdraw at any time during the study

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63 What are the possible discomforts or risks? The study may include risks that are unknown at this time. While in the study, you m ay find out about a psychiatric condition that you did not know about before starting the study. Discomforts you may experience while in this study include emotional distress or embarrassment when asked to think about your feelings related to your partner If you are still a patient at Presbyterian/St. Luke's, you may request to see one of the staff psychologists or psychology fellows. Otherwise, you will be provided with references for community providers if you request them or if staff believes they may be helpful to you. If you choose to utilize these services, you would be responsible for any associated costs. Some participants may feel burdened by filling out the surveys. You are encouraged to participate only if you feel that filling out the surveys will not be a burden. What are the possible benefits of the study? This study is designed for the researcher to learn more about the patient caregiver relationship, social support, coping styles and patient psychosocial distress. This study is not designe d to treat any illness or to improve your health. The potential risks are mentioned in the Discomforts and Risk Section. Who is paying for this study? This research is unfunded. Will I be paid for being in the study? You will not be paid to participate in the study. Will I have to pay for anything? It will not cost you anything to participate in the study. Is my participation voluntary? Taking part in this study is voluntary. You have the right to choose not to take part in this study. If you choose to take part, you have the right to stop at any time. If you refuse or decide to withdraw later, you will not lose any benefits or rights to which you are entitled. If you leave this study, you will still receive your normal medical care. Can I be removed from this study? The study doctor may decide to stop your participation without your permission, if the study doctor thinks that being in the study may cause you harm, or for any other reason. What happens if I am injured or hurt during the study? If you have an injury while you are in this study, you should call Andrea Maikovich Fong, Ph.D. immediately at 720 754 4855 We will arrange for you to get medical care in the unlikely event that you incur an injury that is caused by this research. However, you o r your insurance company will have to pay for that care. Things that must be reported to the authorities:

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64 We respect your right to privacy, but there are some things we cannot keep private. If you give us information about child neglect or child abuse, we have to report this to Social Services. If you give us information about someone hurting someone else, we have to report that to the police. If a court orders us to hand over your study records, we have to hand them over to the court. Who do I call if I have questions? The researchers carrying out this study are Andrea Maikovich Fong, Ph.D. at Presbyterian/St. Luke's Medical Center and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may ask any questions you have at this time. If you have questions later, you may call Andrea Maikovich Fong, Ph.D. at 720 754 4855 You will also be given a copy of this form to keep. You may have questions about your rights as someone in this study. You can call Andrea Maikovich Fong, Ph.D. with que stions or you can also call the HCA HealthONE Institutional Review Board at 303 584 2300 Who will see my research information? To ensure your privacy and confidentiality, once you have filled out the survey information the survey will be connected with a n identifying number, and your personal information such as your name and birthdate, will be kept in locked file cabinet at the Colorado Blood Cancer Institute. We will do everything we can to keep your records private; however, the people who may see the records that identify you and the consent form signed by you include: The study researcher and his/her team of researchers Officials at Presbyterian/St. Luke's Medical Center who are in charge of making sure that we follow all of the rules for research inc luding the HCA HealthONE Institutional Review Board People at the Colorado Multiple Institutional Review Board (COMIRB) We might talk about this research study at professional meetings. We might also print the results of this research study in relevant journals. We will always keep the names of research participants, like you, confidential. We will ask you to sign a different form that talks about who can see your research records. That form is called a HIPAA form. It will give the names of companies an d universities who may see your research records. This authorization does not expire. However, you may with draw this authorization for use and disclosure of your personal health information by providing a written request to the Investigator. If you withdr aw this authorization, the Institution, the Investigator, the research staff, and the research sponsor will no longer be able to use or disclose your personal health information from this study, except so far as that they have already relied on this inform ation to conduct the study. Agreement to be in this study:

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65 By signing below, you are awknowledging that you have read this paper about the study or it was read to you. By signing below you are stating that you understand the possible risks and benefits of this study. You also are stating that you know that being in this study is voluntary. If you choose to be in this study, you will get a copy of this consent form. Signature: ______________________________ Date:_________________________ Printed Name:_____ _________________________________________ I have explained the research to the subject and have answered his/her questions. Consent Form Expla ined By:____________________Date:______________________ Printed Name:_________________________________________ ______ Investigator:____ ____________________________ Date:_________________________

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66 APPENDIX D PATIENT CONSENT FORM CBCI PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous Hematopoietic Stem Cell Transplant (HSCT) INVESTIGATOR: Dr. Benjamin Brewer (720 848 1611 ) SITE: Hematologic Malignancies and BMT Program, University of Colorado Hospital 12700 East 19th Ave, Room 9122 Research Complex 2, Campus Box B170 Aurora, CO 80045 720 848 1611 Introduction You are being asked to participate in a research study conducted at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital by Benjamin Brewer, Psy.D. and Jessica Geller, M.S. from the University of Colorado Denver. Please read the information below, which provides you with information about th e study. A member of the research team will also describe the study and can answer questions about anything you don't understand before you decide whether or not to take part in the study. Why is this study being done? There is limited research examining the relationsip between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study plans to learn more about patient caregiver relationships, social support, and coping styles and patient psychosoci al distress. Why are you being asked to participate in this study? You are being asked to participate in this research study because you are 18 years of age or older and are undergoing an autologous hematopoetic stem cell transplant. Other people in thi s study Up to 70 couples (patients undergoing an autologous transplant and their caregivers) will be contacted to enroll in this research study. What happens if I join this study? If you join the study, you will be asked to fill out two surveys, which will ask some questions about your general physical and mental well being. This survey will also have questions about your relationship with your partner, social support received, and coping style. This survey will take about 45 60 minutes to complete. You will fill it out within the weeks prior to your transplant.

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67 You will fill out a second, shorter survey about one month after your transplant that will take approximately 15 20 minutes to complete. Study participation will only be during these two time p oints. You may withdraw at any time during the study What are the possible discomforts or risks? The study may include risks that are unknown at this time. While in the study, you may find out about a psychiatric condition that you did not know about before starting the study. If this happens, we will let one of the study team members know immediately, so that you can speak with them if you have questions, concerns, or need support. Discomforts you may experience while in this study include emotional distress or embarrassment when asked to think about your feelings related to your partner. If you are still a patient at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital you may request to see one of the staff psychologi sts or psychology fellows. Otherwise, you will be provided with references for community providers if you request them or if staff believes they may be helpful to you. If you choose to utilize these services, you would be responsible for any associated cos ts. Some participants may feel burdened by filling out the surveys. You are encouraged to participate only if you feel that filling out the surveys will not be a burden. What are the possible benefits of the study? This study is designed for the research er to learn more about the patient caregiver relationship, social support, coping styles and patient psychosocial distress. This study is not designed to treat any illness or to improve your health. The potential risks are mentioned in the Discomforts and Risk Section. Who is paying for this study? This research is unfunded. Will I be paid for being in the study? You will not be paid to participate in the study. Will I have to pay for anything? It will not cost you anything to participate in the study. Is my participation voluntary? Taking part in this study is voluntary. You have the right to choose not to take part in this study. If you choose to take part, you have the right to stop at any time. If you refuse or decide to withdraw later, you will not lose any benefits or rights to which you are entitled. If you leave this study, you will still receive your normal medical care. Can I be removed from this study? The study doctor may decide to stop your participation without your permission, if the study doctor thinks that being in the study may cause you harm, or for any other reason.

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68 What happens if I am injured or hurt during the study? If you have an injury while you are in this study, you should call Benjamin Brewer, Psy.D. immediately at at 72 0 848 1611. We will arrange for you to get medical care in the unlikely event that you incur an injury that is caused by this research. However, you or your insurance company will have to pay for that care. Things that must be reported to the authorities: We respect your right to privacy, but there are some things we cannot keep private. If you give us information about child neglect or child abuse, we have to report this to Social Services. If you give us information about someone hurting someone else, we have to report that to the police. If a court orders us to hand over your study records, we have to hand them over to the court. If you let us know about thoughts of harming yourself, we will let one of the study team members know immediately. Who do I c all if I have questions? The researchers carrying out this study are Benjamin Brewer, Psy.D. at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital Jessica Geller, M.S., and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may ask any questions you have at this time. If you have questions later, you may call Jessica Geller, M.S. at 303 476 8165 You will also be given a copy of this form to keep. You may have questions about your rights as someone in this study. You can call Jessica Geller, M.S. with questions or you can also call the HCA HealthONE Institutional Review Board at 303 584 2300 Who will see my research informa tion? To ensure your privacy and confidentiality, once you have filled out the survey information the survey will be connected with an identifying number, and your personal information such as your name and birthdate, will be kept in locked file cabinet at the University of Colorado Anschutz Medical Campus or the Colorado Blood Cancer Institute. We will do everything we can to keep your records private; however, the people who may see the records that identify you and the consent form signed by you include: The study researchers and his/her team of researchers Officials at Presbyterian/St. Luke's Medical Center who are in charge of making sure that we follow all of the rules for research including the HCA HealthONE Institutional Review Board People at the Co lorado Multiple Institutional Review Board (COMIRB) We might talk about this research study at professional meetings. We might also print the results of this research study in relevant journals. We will always keep the names of research participants, like you, confidential. We will ask you to sign a different form that talks about who can see your research records. That form is called a HIPAA form. It will give the names of companies and universities who may see your research records. This authorization d oes not expire. However, you may withdraw this authorization for use and disclosure of your personal health information by providing a written request to the

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69 Investigator. If you withdraw this authorization, the Institution, the Investigator, the research staff, and the research sponsor will no longer be able to use or disclose your personal health information from this study, except so far as that they have already relied on this information to conduct the study. Agreement to be in this study: By signing below, you are awknowledging that you have read this paper about the study or it was read to you. By signing below you are stating that you understand the possible risks and benefits of this study. You also are stating that you know that being in this stud y is voluntary and that any questions you had have been answered to your satisfaction. If you choose to be in this study, you will get a copy of this consent form. Signature:______________________________Date:_________________________ Printed Name:______________________________________________ I have explained the research to the subject and have answered his/her questions. Consent Form Explained By:____________________Date:______________________ Printed Name:_______________________________________________ Investigator:__________________________________Date:______________________

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70 APPENDIX E CAREGIVER CONSENT FORM CBCI PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous Hematopoietic Stem Cell Transplant (HSCT) INVESTIGATOR: Dr. Andrea Maikovich Fong (720 754 4855) SITE: Colorado Blood Cancer Institute, Presbyterian/St. Luke's Medica l Center/Colorado Blood Cancer Institute 1721 East 19 th Avenue, Suite 300 Denver, Colorado 80218 720 754 4800 Introduction You are being asked to participate in a research study. Please read the information below, which provides you with information about the study. A membe r of the research team will also describe the study to you and can answer questions about anything you don't understand before you decide whether or not to take part in the study. Why is this study being done? There is limited research examining the relat ionsip between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study plans to learn more about patient caregiver relationships, social support, coping styles, and patient psychosocial distress. Why are you being asked to participate in this study? You are being asked to participate in this research study because you are 18 years of age or older and are the married/partnered caregiver of a patient undergoing an autologous hematopoetic stem cell transplant. Other people in this study Up to 70 couples (patients undergoing an autologous transplant and their married/partnered caregivers) will be contacted to enroll in this research study. What happens if I join this study? If you join the study, you will be asked to fill out a survey, which will ask you some questions about your general physical and mental well being. This survey will also have questions about your relationship with your partner, social support you provide and your coping style. T his survey will take approximately 45 60 minutes to complete. You will fill it out in the weeks prior to your partner's transplant. Study participation will only be during this time point. You may withdraw at any time during the study. What are the possib le discomforts or risks?

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71 The study may include risks that are unknown at this time. While in the study, you may find out about a psychiatric condition that you did not know about before starting the study. Discomforts you may experience while in this study include emotional distress or embarrassment when asked to think about your feelings related to your partner. If your partner is still a patient at Presbyterian/St. Luke's, you may request to see one of the staff psychologists or psychology fellows. O therwise, you will be provided with references for community providers if you request them or if staff believes they may be helpful to you. If you choose to utilize these services, you would be responsible for any associated costs. Some participants may f eel burdened by filling out the surveys. You are encouraged to participate only if you feel that filling out the surveys will not be a burden. What are the possible benefits of the study? This study is designed for the researcher to learn more about the p atient caregiver relationship, social support, coping styles and patient distress. This study is not designed to treat any illness or to improve your health. The potential risks are mentioned in the Discomforts and Risk Section. Who is paying for this stu dy? This research is unfunded. Will I be paid for being in the study? You will not be paid to participate in the study. Will I have to pay for anything? It will not cost you anything to participate in the study. Is my participation voluntary? Taking par t in this study is voluntary. You have the right to choose not to take part in this study. If you choose to take part, you have the right to stop at any time. If you refuse or decide to withdraw later, you will not lose any benefits or rights to which you are entitled. If you leave this study, your partner will still receive his/her normal medical care. Can I be removed from this study? The study doctor may decide to stop you and your partner's participation without your permission, if the study doctor thi nks that being in the study may cause either of you harm, or for any other reason. What happens if I am injured or hurt during the study? If you have an injury while you are in this study, you should call Andrea Maikovich Fong, Ph.D. immediately at 720 75 4 485 5. We will arrange for you to get medical care in the unlikely event that you incur an injury that is caused by this research. However, you or your insurance company will have to pay for that care. Things that must be reported to the authorities:

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72 We respect your right to privacy, but there are some things we cannot keep private. If you give us information about child neglect or child abuse, we have to report this to Social Services. If you give us information about someone hurting someone else, we hav e to report that to the police. If a court orders us to hand over your study records, we have to hand them over to the court. Who do I call if I have questions? The researchers carrying out this study are Andrea Maikovich Fong, Ph.D. at Presbyterian/St. Luke's Medical Center and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may ask any questions you have at this time. If you have questi ons later, you may call Andrea Maikovich Fong, Ph.D. at 720 754 4855 You will also be given a copy of this form to keep. You may have questions about your rights as someone in this study. You can call Andrea Maikovich Fong, Ph.D. with questions or you ca n also call the HCA HealthONE Institutional Review Board at 303 584 2300 Who will see my research information? To ensure your privacy and confidentiality, once you have filled out the survey information the survey will be connected with an identifying nu mber, and your personal information such as your name and birthdate, will be kept in locked file cabinet at the Colorado Blood Cancer Institute. We will do everything we can to keep your records private; however, the people who may see the records that ide ntify you and the consent form signed by you include: The study researcher and his/her team of researchers Officials at Presbyterian/St. Luke's Medical Center who are in charge of making sure that we follow all of the rules for research including the HCA H ealthONE Institutional Review Board People at the Colorado Multiple Institutional Review Board (COMIRB) We might talk about this research study at professional meetings. We might also print the results of this research study in relevant journals. We will always keep the names of research participants, like you, confidential. We will ask you to sign a different form that talks about who can see your research records. That form is called a HIPAA form. It will give the names of companies and universities who may see your research records. This authorization does not expire. However, you may withdraw this authorization for use and disclosure of your personal health information by providing a written request to the Investigator. If you withdraw this authorizat ion, the Institution, the Investigator, the research staff, and the research sponsor will no longer be able to use or disclose your personal health information from this study, except so far as that they have already relied on this information to conduct t he study. Agreement to be in this study:

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73 By signing below, you are awknowledging that you have read this paper about the study or it was read to you. By signing below you are stating that you understand the possible risks and benefits of this study. You a lso are stating that you know that being in this study is voluntary. If you choose to be in this study, you will get a copy of this consent form. Signature: ______________________________ Date:_________________________ Printed Name:______________________________________________ I have explained the research to the subject and have answered his/her questions. Consent Form Expla ined By:____________________ Date:_________________________ Printed Name:_______________________________________________ Investigator:____ _____________________________ Date:_________________________

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74 APPENDIX F CAREGIVER CONSENT FORM UCH PROTOCOL TITLE: Dyadic Predictors of Psychosocial Distress in Patients Undergoing Autologous Hematopoietic Stem Cell Transplant (HSCT) INVESTIGATOR: Dr. Benjamin Brewer (720 848 1611 ) SITE: Hematologic Malignancies and BMT Program at the University of Colorado Hospital Research Complex 2, Campus Box B170 Aurora, CO 80045 720 848 1611 Introduction You are being asked to participate in a research study conducted at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital by Benjamin Brewer, Psy.D. and Jessica Geller, M.S. from the University of Colorado Denver. Please read the information below, which provides you with information about the study. A member of the research team will also describe the study to you and can answer questions about anything you don't understand before you decide whethe r or not to take part in the study. Why is this study being done? There is limited research examining the relationsip between patients undergoing autologous hematopoetic stem cell transplants and their married/partnered caregivers This study plans to lea rn more about patient caregiver relationships, social support, coping styles, and patient psychosocial distress. Why are you being asked to participate in this study? You are being asked to participate in this research study because you are 18 years of a ge or older and are the married/partnered caregiver of a patient undergoing an autologous hematopoetic stem cell transplant. Other people in this study Up to 70 couples (patients undergoing an autologous transplant and their married/partnered caregivers) will be contacted to enroll in this research study. What happens if I join this study? If you join the study, you will be asked to fill out a survey, which will ask you some questions about your general physical and mental well being. This survey will al so have questions about your relationship with your partner, social support you provide and your coping style. This survey will take about 45 60 minutes to complete. You will fill it out in the weeks prior to your partner's transplant. Study participation will only be during this time point. You may withdraw at any time during the study.

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75 What are the possible discomforts or risks? The study may include risks that are unknown at this time. While in the study, you may find out about a psychiatric condition t hat you did not know about before starting the study. If this happens, we will let one of the study team members know immediately, so that you can speak with them if you have questions, concerns, or need support. Discomforts you may experience while in this study include emotional distress or embarrassment when asked to think about your feelings related to your partner. If your partner is still a patient at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital you may reque st to see one of the staff psychologists or psychology fellows. Otherwise, you will be provided with references for community providers if you request them or if staff believes they may be helpful to you. If you choose to utilize these services, you would be responsible for any associated costs. Some participants may feel burdened by filling out the surveys. You are encouraged to participate only if you feel that filling out the surveys will not be a burden. What are the possible benefits of the study? Th is study is designed for the researcher to learn more about the patient caregiver relationship, social support, coping styles and patient distress. This study is not designed to treat any illness or to improve your health. The potential risks are mentioned in the Discomforts and Risk Section. Who is paying for this study? This research is unfunded. Will I be paid for being in the study? You will not be paid to participate in the study. Will I have to pay for anything? It will not cost you anything to participate in the study. Is my participation voluntary? Taking part in this study is voluntary. You have the right to choose not to take part in this study. If you choose to take part, you have the right to stop at any time. If you refuse or decide to wi thdraw later, you will not lose any benefits or rights to which you are entitled. If you leave this study, your partner will still receive his/her normal medical care. Can I be removed from this study? The study doctor may decide to stop you and your part ner's participation without your permission, if the study doctor thinks that being in the study may cause either of you harm, or for any other reason. What happens if I am injured or hurt during the study? If you have an injury while you are in this study you should call Benjamin Brewer, Psy.D. immediately at 720 848 1611. We will arrange for you to get medical care in the unlikely

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76 event that you incur an injury that is caused by this research. However, you or your insurance company will have to pay for t hat care. Things that must be reported to the authorities: We respect your right to privacy, but there are some things we cannot keep private. If you give us information about child neglect or child abuse, we have to report this to Social Services. If you give us information about someone hurting someone else, we have to report that to the police. If a court orders us to hand over your study records, we have to hand them over to the court. If you let us know about thoughts of harming yourself, we will let one of the study team members know immediately. Who do I call if I have questions? The researchers carrying out this study are Benjamin Brewer, Psy.D. at the Hematologic Malignancies and BMT Program at the University of Colorado Hospital Jessica Geller, M.S., and Kristin Kilbourn, Ph.D., M.P.H. at the University of Colorado Denver. You may ask any questions you have at this time. If you have questions later, you may call Jessica Geller, M.S. at 303 476 8165 You will also be given a copy of this form to keep. You may have questions about your rights as someone in this study. You can call Jessica Geller, M.S. with questions or you can also call the HCA HealthONE Institutional Review Board at 303 584 2300 Who will see my research information? To ensure y our privacy and confidentiality, once you have filled out the survey information the survey will be connected with an identifying number, and your personal information such as your name and birthdate, will be kept in locked file cabinet at the University o f Colorado Anschutz Medical Campus or the Colorado Blood Cancer Institute. We will do everything we can to keep your records private; however, the people who may see the records that identify you and the consent form signed by you include: The study researcher and his/her team of researchers Officials at Presbyterian/St. Luke's Medical Center who are in charge of making sure that we follow all of the rules for research including the HCA HealthONE Institutional Review Board People at the Colorado Multi ple Institutional Review Board (COMIRB) We might talk about this research study at professional meetings. We might also print the results of this research study in relevant journals. We will always keep the names of research participants, like you, confid ential. We will ask you to sign a different form that talks about who can see your research records. That form is called a HIPAA form. It will give the names of companies and universities who may see your research records. This authorization does not expi re. However, you may withdraw this authorization for use and disclosure of your personal health information by providing a written request to the Investigator. If you withdraw this authorization, the Institution, the Investigator, the research staff, and t he research sponsor will no longer be able to use or disclose your

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77 personal health information from this study, except so far as that they have already relied on this information to conduct the study. Agreement to be in this study: By signing below, you a re awknowledging that you have read this paper about the study or it was read to you. By signing below you are stating that you understand the possible risks and benefits of this study. You also are stating that you know that being in this study is volunta ry and that any questions you had have been answered to your satisfaction. If you choose to be in this study, you will get a copy of this consent form. Signature:______________________________Date:_________________________ Printed Name:__________________ ____________________________ I have explained the research to the subject and have answered his/her questions. Consent Form Explained By:____________________Date:______________________ Printed Name:_______________________________________________ Investigator:__________________________________Date:________________

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78 APPENDIX G PATIENT PRE TRANSPLANT SURVEY Today's Date: __ __ /__ __ / __ __ __ __ Your Name: ________________________________________________ Your Date of Birth: __ __ /__ __ / __ __ __ __ This cover sheet will be removed to protect your privacy. Thank you for taking the time to complete this survey! Researcher Only Study ID:_____________ Dyad ID:______________

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79 Patient Pre transplant Survey Packet General Instructions Please take your time and answer all questions in this survey. There are no right or wrong answers. Please select the answer that fits best for you. For some questions, you may have to write out an answer. Please write your answer carefully so we can read it. If you change your mind, draw an X through your original answer, and select a new answer. The responses you provide in this survey will not be shared with your spouse/partner. Your responses will also not impact the medical care that you receive. I. Demographics Remember, there are no right or wrong answers. Please select the answer that fits best for you. Put a checkmark next to your answer. 1. What is your gender? a. _____ Female b. _____ Male c. _____ Transgender 2. Which of the following best describes your racial/ethnic background? a. _____ White, not of Hispanic origin b. _____ Black or African American, not of Hispanic origin c. _____ Hispanic d. _____ American Indian/Alaskan Native e. ___ __ Asian/Pacific Islander f. _____ Multi Ethnic e. _____ Other (please specify)______________________ 3. What is your current relationship status? a. _____ Married b. _____ Committed relationship c. _____ Other (please specify)_______________________ 4. How long have you been in a relationship with your partner? ________Years________Months 5. Do you have children? a. _____ Yes If yes, how many? _____What are their ages?_____ Do they live with you?____

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80 b. _____ No 6. What is the highest level of education you have completed? a. _____ Less than high school b. _____ Some high school c. _____ High school graduate d. _____ Some college e. _____ College graduate f. _____ Graduate education 7. What is your current employment status? a. _____ Employed full time (including self employed) b. _____ Employed part time (including self employed) c. _____ Full time homemaker d. _____ Full time or Part time volunteer e. _____ Full time student f. _____ O n temporary medical leave/disability g. _____ Retired h. _____ Unemployed i. _____ Permanently unable to work 8. What is your occupation? ____________________________________________ 9. Approximately what is your current annual household income? a. _____ $0 $25,000 b. _____ $25,001 $50,000 c. _____ $50,001 $75,000 d. _____ $75,001 $100,000 e. _____ $100,000+ II. General Health and Mental Well Being 10. In general, would you say your health is: a. _____ Excellent b. _____ Very Good c. _____ Good d. _____ Fair e. _____ Poor 11. How severe do you feel your diagnosis is? a. _____ Very severe b. _____ Somewhat severe c. _____ Mildly severe d. _____ Not at all severe 12. Do you have any other chronic conditions or illnesses at this time?

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81 a. _____ Yes If yes, please specify_________________________________________ b. _____ No 13. If you have another chronic condition or illness, how much does it interfere with your day to day activities? a. _____ Not at all b. _____ A little c. _____ A great deal 14. Please check if you have any of the following diagnoses? a. _____ Depression b. _____ Bipolar disorder c. _____ Anxiety d. _____ Schizophrenia e. _____ Eating disorder f. _____ ADHD 15. If you checked any of the diagnoses listed above, are you currently on any medications for them? a. _____Yes If yes, which medication(s)______________________________________ b. _____No 16. If you checked any of the diagnoses listed above, are yo u currently seeing a counselor or therapist for them? a. _____Yes If yes, how often______________________________________________ b. _____No 17. Are you and your partner currently in couples counseling? a. _____Yes If yes, how often do you go?_________ ________________________ b. _____No III. Caregiving 18. Caregiving can be defined as the act of caring for someone who is physically ill. Often, caregivers have many different roles, including helping or supporting loved ones with physical, emotional, and practical needs. Do you feel that your partner has served as a caregiver to you? a. _____ Yes If yes, approximately how long has your partner been helping to serve as a caregiver for you? ________Years ________ Months b. _____ No

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82 Partner Responses to Cancer Inventory INSTRUCTIONS : The purpose of this questionnaire is to find out how your spouse/partner has responded in helping you deal with the cancer experience. You may encounter thoughts, feelings, or situations related to having canc er. Please think about thoughts, feelings, or situations you have encountered in the past month related to your own cancer experience. The statements below are possible responses your spouse/partner may have had. Please rate each item as to HOW OFTEN you r partner has responded in these ways DURING THE PAST MONTH Please note that Not Applicable is NOT a response option. Each event either did or did not occur, to varying degrees. If you feel that a response does not apply to your situation because your partner did not respond in this way or because you were not feeling ill, please mark 1 for "Never responded this way." The ratings are as follows: 1 = Never responded this way 2 = Rarely responded this way 3 = Sometimes responded this way 4 = Often responded this way DURING THE PAST MONTH, WHEN DEALING WITH THE CANCER EXPERIENCE, MY Spouse/Partner ______1. Joked and tried to cheer me up. ______2. Asked me how I was feeling. ______3. Let me know that they would always be around if I needed assistance. ______4. Comforted me by showing me some physical affection. ______5. Did household chores or errands I found difficult to do. ______6. Handled or cleared up money matters. ______7. Provided me with transportation. ______8. Pitched in to do something that needed to be done

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83 Date: __________ Cli ent Number: _______ Test (please circle one): Pre Post Gender (pl ease circle one): M F REVISED DYADIC ADJUSTMENT SCALE (RDAS) Most persons have disagreements in their relationships. Please indicate below the approximate extent of agreement or disagreement between you and your partner for each item on the follo wing list. Almost Occa Fre Almost Always Always sionally quently Always Always Agree Agree Agree Disagree Disagree Disagree 1. Religious matters 5 4 3 2 1 0 2. Demonstrations of 5 4 3 2 1 0 affection 3. Making major decisions 5 4 3 2 1 0 4. Sex relations 5 4 3 2 1 0 5. Conventionality (correct 5 4 3 2 1 0 or proper behavior) 6. Career decisions 5 4 3 2 1 0 More All Most of often Occa the time the time than not sionally Rarely Never 7. How often do you discuss or have you consi dered 0 1 2 3 4 5 divorce, separation, or terminating your relationship 8. How often do you and 0 1 2 3 4 5 your partner quarrel? 9. Do you ever regret that 0 1 2 3 4 5 you married (or lived together)? 10. How often do you and 0 1 2 3 4 5 your More All Most of often Occa the time the time than not sionally Never 11. Do you and your mate engage in outside interests 4 3 2 1 0 together? (PLEASE TURN PAGE OVER AND COMPLETE BACK SIDE) How often would you say the following events occur between you and your mate? Less than Once or Once or once a twice a twice a Once a More Never month month week day often 12. Have a stimulating 0 1 2 3 4 5 exchange of ideas 13. Work together on a 0 1 2 3 4 5 project 14. Calmly discuss 0 1 2 3 4 5 something THE FOLLOWING SECTION IS FOR COUNSELOR USE ONLY: SCORING (Please sum the following items.): CONSENSUS: SATISFACTION: COHESION: Decision Making (#3+#6) _____ Stability (#7+#9) _____ Activities (#11+#13) _____ Values (#1+#5) _____ Conflict (#8+#10) _____ Discussion (#12+#14) _____ Affection (#2+#4) _____ Sub Total _____ Sub Total _____ Sub Total _____ GRAND TOTAL _______

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84 SOCIAL SUPPORT EFFECTIVENESS QUESTIONNAIRE (SSE Q) Supportive Behaviors Instructions : In our daily lives, we sometimes need help or support from people who are close to us. The following questions ask about help or support you may have received from your spouse/partner in the past month and what you thought of it. You will be asked about three different types of help or support: 1) Help with tasks or responsibilities, 2) Advice or information, and 3) Emotional support. 1. Sometimes we need help wi th tasks and responsibilities such as household chores, running errands, or childcare. When your spouse/ partner attempted to help you with your tasks and responsibilities, how good was the match between the amount of help provided and the amount you wanted ? Very Poor (it was far too little or far too much help) Poor (it was too little or too much help) Fair (it was somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right am ount of help) 2. To what extent did you wish your spouse's/partner's help had been different somehow for instance, a different type of help, or offered in a different way or at a different time ? Not at all A little bit Moderately Quite a bit Extrem ely 3. When help with tasks and responsibilities is provided skillfully it makes you feel less burdened and you don't feel bad for needing it. When your spouse/partner attempted to help you with tasks and responsibilities, to what extent was his/her hel p provided skillfully ? Not at all A little bit Moderately Quite a bit Extremely 4. When you needed your spouse's/partner's help with tasks and responsibilities, how often was it difficult to get? Never Rarely Sometimes Often Always 5. How often did your spouse/ partner offer to help you with tasks and responsibilities without you having to ask? Never Rarely Sometimes Often Always 6. Sometimes we need advice or information for instance, on how to get something done or how to handle a problem. When your spouse/partner attempted to give you advice or information, how good was the match between the amount he/she provided and the amount you wanted? Very Poor (it was far too little or far too much help) Poor (it was too little or too much help) Fair (it w as somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right amount of help) HELP WITH TASKS AND RESPO NSIBILITIES in the past month ADV ICE OR INFORMATION in th e past month

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85 7. To what extent did you wish your spouse 's /partner's advice or information had been diffe rent somehow for instance, a different type of help, or offered in a different way or at a different time ? Not at all A little bit Moderately Quite a bit Extremely 8. When advice or information is provided skillfully it is useful and you don't fe el bad for needing it. When your spouse/partner attempted to give you advice or information, to what extent was it provided s killfully ? Not at all A little bit Moderately Quite a bit Extremely 9. When you needed advice or information from your sp ouse/partner how often was it difficult to get? Never Rarely Sometimes Often Always 10. How often did your spouse/partner offer helpful advice or information without you having to ask for it? Never Rarely Sometimes Often Always 11. Som etimes we need emotional support someone to listen to and understand our feelings or to show us affection and concern. When your spouse/partner attempted to give you emotional support, how good was the match between the amount of support he/she provided an d the amount you wanted? Very Poor (it was far too little or far too much help) Poor (it was too little or too much help) Fair (it was somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right amount of help) 12. To what extent did you wish your spouse 's /partner's emotional support had been different somehow for instance, a different type of support, or offered in a different way or at a different time ? Not at all A l ittle bit Moderately Quite a bit Extremely 13. When emotional support is provided skillfully it makes you feel loved and cared for and you don't feel bad for needing support. When your spouse/partner attempted to give you emotional support, to what e xtent was the support provided skillfully ? Not at all A little bit Moderately Quite a bit Extremely 14. When you needed emotional support from your spouse/partner how often was it difficult to get? Never Rarely Sometimes Often Always EMOTIO NAL SUPPORT in the past month

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86 When you received help or support from your spouse/partner in the past month did it ever make you feel any of these things?: 15. How often did your spouse/partner offer emotional support without you having to ask for it? Never Rarely Sometimes Oft en Always 16. Disrespected/Insulted Yes No 17. Helpless !!!!!!!! Yes No 18. Incompetent !!!!!! .. Yes No 19. Guilty !!!!!!!!! .. Yes No 20. Ashamed/Embarrassed .. Yes No 21. Stupid/Unintelligent !!! .. Yes No 22. Indebted, like you owe something in return !!! Yes No 23. Frustrated !!!!!! Yes No 24. Angry !!!!!!!! Yes No 25. Irritated !!!!!!!! .. Yes No

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87 Dyadic Coping Inventory (DCI) This scale is designed to measure how you and your partner cope with stress. Please indicate the first response that you feel is appropriate. Please be as honest as possible. Please response to any item by marking the appropri ate case, which is fitting to your personal situati on. There are no false answers. How you communicate your stress to your partner ? never/ very rarely rarely sometimes often very often 1. I let my partner know that I appreciate his/her pra ctical support, advice, or help. ! 2. I ask my partner to do things for me when I have to o much to do. ! 3. I show my partner through my behaviour when I am no t doing well or when I have problems. ! 4. I tell my partner openly how I feel and that I woul d appreciate his/her support. ! What your partner does when you are feeling stresse d? 5. My partner shows empathy and understanding to me ! 6. My partner expresses that he/she is on my side. ! 7. My partner blames me for not coping well enough with stress. ! 8. My partner helps me to see stressful situations in a different light. ! 9. My partner listens to me and gives me the opportuni ty to communicate what really bothers me. ! 10. My partner does not take my stress seriously. ! 11. My partner provides support, but does so unwillingl y and unmotivated. ! 12. My partner takes on things that I normally do in or der to help me out. ! 13. My partner helps me analyze the situation so that I can better face the problem. ! 14. When I am too busy, my partner helps me out. ! 15. When I am stressed, my partner tends to withdraw. ! How your partner communicates when he/she is feelin g stressed? 16. My partner lets me know that he/she appreciates my practical support, advice, or help. ! 17. My partner asks me to do things for him/her when he has too much to do. !

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88 For #35: Even if you have restrictions now, answer this question regarding how you generally cope. How your partner communicates when he/she is feelin g stressed? 18. My partner shows me through his/her behaviour that he/she is not doing well or when he/she has problems. ! 19. My partner tells me openly how he/she feels and tha t he/she would appreciate my support. ! What you do when your partner makes know his/her stress? never/ very rarely rarely sometimes often very often 20. I show empathy and understanding to my partner. ! 21. I express to my partner that I am on his/her side. ! 22. I blame my partner for not coping well enough with stress. ! 23. I tell my partner that his/her stress is not that b ad and help him/her to see the situation in a different light. ! 24. I listen to my partner and give him/her space and t ime to communicate what really bothers him/her. ! 25. I do not take my partner's stress seriously. ! 26. When my partner is stressed I tend to withdraw. ! 27. I provide support, but does so unwillingly and unmo tivated because I think that he/she should cope with his/he r problems on his/her own. ! 28. I take on things that my partner would normally do in order to help him/her out. ! 29. I try to analyze the situation together with my par tner in an objective manner and help him/her to understand and change the problem. ! 30. When my partner feels he/she has too much to do, I help him/her out. ! What you and your partner do when you are both feel ing stressed? 31. We try to cope with the problem together and search for ascertained solutions. ! 32. We engage in a serious discussion about the problem and think through what has to be done. ! 33. We help one another to put the problem in perspecti ve and see it in a new light. ! 34. We help each other relax with such things like mass age, taking a bath together, or listening to music together. ! 35. We are affectionate to each other, make love and tr y that way to cope with stress. !

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89 VII. Psychosocial Distress Below is list of problems people sometimes have. Read each one carefully and circle the number of the response that best describes how much that problem has distressed or bothered you during the past week. Not at All A little Bit Moder ately Quite a Bit Extre mely 1. Faintness or dizziness. # # # # # 2. Feeling no interest in things # # # # # 3. Nervousness or shakiness. # # # # # 4. Pains in heart or chest. # # # # # 5. Feeling lonely. # # # # # 6. Feeling tense or keyed up. # # # # # 7. Nausea or upset stomach. # # # # # 8. Feeling blue. # # # # # 9. Suddenly scared for no reason. # # # # # 10. Trouble getting your breath. # # # # # 11. Feelings of worthlessness. # # # # # 12. Spells of terror or panic. # # # # # 13. Numbness or tingling in parts of your body. # # # # # 14. Feeling hopeless about the future. # # # # # 15. Feeling so restless you couldn't sit still. # # # # # 16. Feeling weak in parts of your body. # # # # # 17. Thoughts of ending your life. # # # # # 18. Feeling fearful. # # # # # H ow you evaluate your coping as a couple ? 36. I am satisfied with the support I receive from my partner and the way we deal with stress together. ! 37. I am satisfied with the support I receive from my p artner and I find as a couple, the way we deal with stress toget her is effective ! Dyadic Coping Inventory (DCI) Bodenmann, G. (2008). Dyadic Coping Inventory (DCI). Test manual Bern/Gšttingen: Huber Testverlag. Subscale Items Stress Communication by Oneself 1, 2, 3, 4 Stress Communication by Partner 16, 17, 18, 19 Emotion-Focused Supportive Dyadic Copipng by Onese lf 20, 21, 24 Emotion-Focused Supportive Dyadic Copipng by Partne r 5, 6, 9 Problem-Focused supportive Dyadic Coping by Oneself 23, 29 Problem-Focused supportive Dyadic Coping by Partner 8, 13 Delegated Dyadic cping by Oneself 28, 30 Delegated Dyadic Coping by Partner 12, 14 Emotion-Focused Common Dyadic Coping 34, 35 Problem-Focused Common Dyadic Coping 31, 32, 33 Evaluation of Dyadic Coping 36, 37 Aggregated Scales Dyadic Coping by Oneself 1,2,3,4 and 20 through 30 Dyadic Coping by Partner 5 through 19

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90 Below is a list of difficulties people sometimes have during stressful life events. Please read each item, and then indicate how distressing each difficulty has been for you during the past week with respect to your transplant how much were you distressed or bothered by these difficulties? During the past week with respect to your upcoming transplant how much were you distressed or bothered by these difficulties? Not at all A little bit Moderately Quite a bit Extremely 1. Any reminder brought back feelings about it. 2. I had trouble staying asleep. 3. Other things kept making me think about it. 4. I felt irritable and angry 5. I avoided letting myself get upset when I thought about it or was reminded of it. 6. I thought about it when I didn't mean to. 7. I felt as if it is not happening or is not real. 8. I stayed away from reminders of it. 9. Pictures about it popped into my mind. 10. I was jumpy and easily startled. 11. I tried not to think about it. 12. I was aware that I still had a lot of feelings about it, but I didn't deal with them. 13. My feelings about it were kind of numb. 14. I found myself acting or feeling like I was at the transplant.

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91 15. I had trouble falling asleep. 16. I had waves of strong feelings about it. 17. I tried to remove it from my thoughts. 18. I had trouble concentrating. 19. Reminders of it caused me to have physical reactions, such as sweating, trouble breathing, nausea, or a pounding heart. 20. I had dreams about it. 21. I felt watchful and on guard. 22. I tried not to talk about it. Below is a list of some ways you may have felt or behaved. Please indicate how often you have felt this way during the past week by checking the appropriate space. Please only provide one answer to each question. During the past week: Rarely or none of the time (less then 1 day) Some or a little of the time (1 2 days) Occasionally or a moderate amount of the time (3 4 days) Most or all of the time (5 7 days) 1. I was bothered by things that usually don't bother me. 2, I did not feel like eating; my appetite was poor. 3. I felt that I could not shake off the blues even with help from my family or friends.. 4. I felt that I was just as good as other people. 5. I had trouble keeping my mind on what I was doing. 6. I felt depressed. 7. I felt that everything I did was an effort.

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92 8. I felt hopeful about the future. 9. I thought my life had been a failure. 10. I felt fearful. 11. My sleep was restless. 12. I was happy. 13. I talked less than usual. 14. I felt lonely. 15. People were unfriendly. 16. I enjoyed life. 17. I had crying spells. 18. I felt sad. 19. I felt that people disliked me. 20. I could not get "going." You have reached the end of the survey. We appreciate you taking the time to fill this out! Your answers are very important to us so please double check that you have answered each of the questions.

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93 APPENDIX H CAREGIVER PRE TRANSPLANT SURVEY Today's Date: __ __ /__ __ / __ __ __ __ Your Name: ________________________________________________ Your Date of Birth: __ __ /__ __ / __ __ __ __ This cover sheet will be removed to protect your privacy. Thank you for taking the time to complete this survey! Researcher Only Study ID:_____________ Dyad ID:______________

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94 Caregiver Pre transplant Survey Packet General Instructions Please take your time and answer all questions in this survey. There are no right or wrong answers. Please select the answer that fits best for you. For some questions, you may have to write out an answer. Please write your answer carefully so we can read it. If you change your mind, draw an X through your original answer, and select a new answer. The responses you provide in this survey will not be shared with your spouse/partner. Your responses will also not impact the medical care that your partner receives. I. Demographics Remember, there are no right or wrong answers. Please select the answer that fits best for you. Put a checkmark next to your answer. 1. What is your gender? a. _____ Female b. _____ Male C. _____Transgender 2. Which of the following best describe s your racial/ethnic background? a. _____ White, not of Hispanic origin b. _____ Black or African American, not of Hispanic origin c. _____ Hispanic d. _____ American Indian/Alaskan native e. _____ Asian/Pacific Islander f. _____ Multi Ethnic e. _____ O ther (please specify)______________________ 3. Do you have children? a. _____ Yes If yes, how many? _____What are their ages?_____ Do they live with you?____ b. _____ No 4. What is the highest level of education you have completed? a. ___ __ Less than high school b. _____ Some high school c. _____ High school graduate d. _____ Some college e. _____ College graduate

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95 f. _____ Graduate education 5. What is your current employment status? a. _____ Employed full time (including self employed) b. _____ Employed part time (including self employed) c. _____ Full time homemaker d. _____ Full time or Part time volunteer e. _____ Full time student f. _____ On temporary medical leave/disability g. _____ Retired h. _____ Un employed i. _____ Permanently unable to work 6. What is your occupation? ____________________________________________ II. General Health and Mental Well Being 7. In general, would you say your health is: a. _____ Excellent b. _____ Very Good c. _____ Good d. _____ Fair e. _____ Poor 8. Do you have any chronic conditions or illnesses at this time? a. _____ Yes If yes, please specify_________________________________________ b. _____ No 9. If you have a chronic condition or illness, how much does it interfere with your day to day activities? a. _____ Not at all b. _____ A little c. _____ A great deal 10. Please check if you have any of the following diagnoses? a. _____ Depression b. _____ Bipolar disorder c. _____ Anxiety d. _____ Schizophrenia e. _____ Eating disorder f. _____ ADHD 11. If you checked any of the diagnoses listed above, are you currently on any medications for them?

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96 a. _____Yes If yes, which medication(s)______________________________________ b. __ ___No 12. If you checked any of the diagnoses listed above, are you currently seeing a counselor or therapist for them? a. _____Yes If yes, how often______________________________________________ b. _____No III. Caregiving 13. How severe do you feel your partner's diagnosis is? a. _____Very severe b. _____Somewhat severe c. _____Mildly severe d. _____Not at all severe 14. Caregiving can be defined as the act of caring for someone who is physically ill. Often, caregivers have many different role s, including helping or supporting loved ones with physical, emotional, and practical needs. Do you feel that you have served as a caregiver to your partner? a. _____ Yes If yes, approximately how long have you been serving as a caregiver to your part ner? ________Years ________ Months b. _____ No

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97 Partner Responses to Cancer Inventory INSTRUCTIONS : The purpose of this questionnaire is to find out how you perceive you have responded in helping your spouse/partner deal with the cancer experience. Your partner may encounter thoughts, feelings, or situations related to having cancer. Please think abou t thoughts, feelings, or situations your partner has encountered in the past month related to their cancer experience. Please rate each item as to HOW OFTEN you responded in these ways DURING THE PAST MONTH Please note that Not Applicable is NOT a resp onse option Each event either did or did not occur, to varying degrees. If you feel that a response does not apply to your situation because you did not respond in this way or because your partner/partner was not feeling ill, please mark 1 for "Never re sponded this way." The ratings are as follows: 1 = Never responded this way 2 = Rarely responded this way 3 = Sometimes responded this way 4 = Often responded this way DURING THE PAST MONTH, WHEN DEALING WITH THE CANCER EXPERIENCE, I ______1. Joked and tried to cheer my partner up. ______2. Asked my partner how they were feeling. ______3. Let my partner know that I would always be around if they needed assistance. _____ 4. Comforted my partner by showing them some physical affection. ______5. Did household chores or errands my partner found difficult to do. ______6. Handled or cleared up money matters. ______7. Provided my partner with transportation. ______8. Pitched in to do something that needed to be done.

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98 Date: __________ Cli ent Number: _______ Test (please circle one): Pre Post Gender (pl ease circle one): M F REVISED DYADIC ADJUSTMENT SCALE (RDAS) Most persons have disagreements in their relationships. Please indicate below the approximate extent of agreement or disagreement between you and your partner for each item on the follo wing list. Almost Occa Fre Almost Always Always sionally quently Always Always Agree Agree Agree Disagree Disagree Disagree 1. Religious matters 5 4 3 2 1 0 2. Demonstrations of 5 4 3 2 1 0 affection 3. Making major decisions 5 4 3 2 1 0 4. Sex relations 5 4 3 2 1 0 5. Conventionality (correct 5 4 3 2 1 0 or proper behavior) 6. Career decisions 5 4 3 2 1 0 More All Most of often Occa the time the time than not sionally Rarely Never 7. How often do you discuss or have you consi dered 0 1 2 3 4 5 divorce, separation, or terminating your relationship 8. How often do you and 0 1 2 3 4 5 your partner quarrel? 9. Do you ever regret that 0 1 2 3 4 5 you married (or lived together)? 10. How often do you and 0 1 2 3 4 5 your More All Most of often Occa the time the time than not sionally Never 11. Do you and your mate engage in outside interests 4 3 2 1 0 together? (PLEASE TURN PAGE OVER AND COMPLETE BACK SIDE) How often would you say the following events occur between you and your mate? Less than Once or Once or once a twice a twice a Once a More Never month month week day often 12. Have a stimulating 0 1 2 3 4 5 exchange of ideas 13. Work together on a 0 1 2 3 4 5 project 14. Calmly discuss 0 1 2 3 4 5 something THE FOLLOWING SECTION IS FOR COUNSELOR USE ONLY: SCORING (Please sum the following items.): CONSENSUS: SATISFACTION: COHESION: Decision Making (#3+#6) _____ Stability (#7+#9) _____ Activities (#11+#13) _____ Values (#1+#5) _____ Conflict (#8+#10) _____ Discussion (#12+#14) _____ Affection (#2+#4) _____ Sub Total _____ Sub Total _____ Sub Total _____ GRAND TOTAL _______

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99 SOCIAL SUPPORT EFFECTIVENESS QUESTIONNAIRE (SSE Q ) Supportive Behaviors Instructions : In our daily lives, we sometimes need help or support from people who are close to us. The following questions ask about help or support you may have given your spouse/ partner in the past month and what you thought of it. We know it's sometimes hard to know what your spouse/ partner thinks of support you provide. When you answer these questions, just answer as best you can, trying to be as honest as possible. You will be asked about three different types of help or support provided : 1) Help with tasks or responsibilities, 2) Advice or information, and 3) Emotional support. 1. Sometimes we need help with tasks and responsibilities such as household chores, running er rands, o r childcare. When you attempted to help you r spouse/partner with tasks and responsibilities, how good was the match between the amount of help you provided and the amount he/she wanted? Very Poor (it was far too little or far too much help) Poor (it was too little or too much help) Fair (it was somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right am ount of help) 2. To what extent did you r spouse/partner wish your help had been different somehow for instance, a different type of help, or offered in a different way or at a different time ? Not at all A little bit Moderately Quite a bit Extremely 3. When help with tasks and responsibilities is provided skillfully it makes you feel less burdened and you don't feel bad for needing it. When you attempted to help you r spouse/partner with tasks and responsibilities, to what extent was your help prov ided skillfully ? Not at all A little bit Moderately Quite a bit Extremely 4. When you r partner needed your help with tasks and responsibilities, how often was it difficult to get that help from you ? Never Rarely Sometimes Often Always 5. How often did you offer to h elp your spouse/partner with tasks and responsibilities without you r partner/spouse having to ask for your help ? Never Rarely Sometimes Often Always 6. Sometimes we need advice or information for instance, on how to get something done or how to handle a problem. When you attempted to give you r spouse/partner advice or information, how good was the match between the amount you provided and the amount he/she wanted? HELP WITH TASKS AND RESPONSIBILITIES in the past month ADVIC E OR INFORMATION in the past month

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100 Very Poor (it was far too little or far too much help) Poor (it was t oo little or too much help) Fair (it was somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right amount of help) 7. To what extent did you r spouse/partner wish your advice or information had been different somehow for instance, a different type of help, or offered in a different way or at a different time ? Not at all A little bit Moderately Quite a bit Extremely 8. When advice or information is provided skill fully it is useful and you don't feel bad for needing it. When you attempted to give you r spouse/partner advice or information, to what extent was it provided s killfully ? Not at all A little bit Moderately Quite a bit Extremely 9. When you r spou se/partner needed your help with advice or information, how often was it difficult to get that help from you ? Never Rarely Sometimes Often Always 10. How often did you offer your spouse/partner helpful advice or information without you r spouse/par tner having to ask for it? Never Rarely Sometimes Often Always 11. Sometimes we need emotional support someone to listen to and understand our feelings or to show us affection and concern. When you attempted to give you r spouse/partner emotional support, how good was the match between the amount of support you provided and the amount he/she wanted? Very Poor (it was far too little or far too much help) Poor (it was too little or too much help) Fair (it was somewhat too little or somewhat too much help) Good (it was close to being the right amount of help) Excellent (it was exactly the right amount of help) 12. To what extent did you r spouse/partner wish your emotional support had been different somehow for instance, a different type of s upport, or offered in a different way or at a different time ? Not at all A little bit Moderately Quite a bit Extremely 13. When emotional support is provided skillfully it makes you feel loved and cared for and you don't feel bad for needing suppor t. When you attempted to give you r spouse/partner emotional support, to what extent was the support provided skillfully ? Not at all A little bit Moderately Quite a bit Extremely 14. When you r spouse/partner needed emotional support from you how of ten was it difficult to get that support from you ? Never Rarely Sometimes Often Always EMOTIONAL SUPPORT in the past month

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101 W hen you provided help or support to your spouse/partner in the past month did your support ever make you r partner feel any of these things?: 15. How often did you offer em otional support without you r spouse/partner having to ask for your support ? Never Rarely Sometimes Often Always 16. Disrespected/Insulted Yes No 17. Helpless !!!!!!!! Yes No 18. Incompetent !!!!!! .. Yes No 19. Guilty !!!!!!!!! .. Yes No 20. Ashamed/Embarr assed .. Yes No 21. Stupid/Unintelligent !!! .. Yes No 22. Indebted, like you owe something in return !!! Yes No 23. Frustrated !!!!!! Yes No 24. Angry !!!!!!!! Yes No 25. Irritated !!!!!!!! .. Yes No

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102 Dyadic Coping Inventory (DCI) This scale is designed to measure how you and your partner cope with stress. Please indicate the first response that you feel is appropriate. Please be as honest as possible. Please response to any item by marking the appropri ate case, which is fitting to your personal situati on. There are no false answers. How you communicate your stress to your partner ? never/ very rarely rarely sometimes often very often 1. I let my partner know that I appreciate his/her pra ctical support, advice, or help. ! 2. I ask my partner to do things for me when I have to o much to do. ! 3. I show my partner through my behaviour when I am no t doing well or when I have problems. ! 4. I tell my partner openly how I feel and that I woul d appreciate his/her support. ! What your partner does when you are feeling stresse d? 5. My partner shows empathy and understanding to me ! 6. My partner expresses that he/she is on my side. ! 7. My partner blames me for not coping well enough with stress. ! 8. My partner helps me to see stressful situations in a different light. ! 9. My partner listens to me and gives me the opportuni ty to communicate what really bothers me. ! 10. My partner does not take my stress seriously. ! 11. My partner provides support, but does so unwillingl y and unmotivated. ! 12. My partner takes on things that I normally do in or der to help me out. ! 13. My partner helps me analyze the situation so that I can better face the problem. ! 14. When I am too busy, my partner helps me out. ! 15. When I am stressed, my partner tends to withdraw. ! How your partner communicates when he/she is feelin g stressed? 16. My partner lets me know that he/she appreciates my practical support, advice, or help. ! 17. My partner asks me to do things for him/her when he has too much to do. !

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103 For #35: Even if you have restrictions now, answer this question regarding how you generally cope. How your partner communicates when he/she is feelin g stressed? 18. My partner shows me through his/her behaviour that he/she is not doing well or when he/she has problems. ! 19. My partner tells me openly how he/she feels and tha t he/she would appreciate my support. ! What you do when your partner makes know his/her stress? never/ very rarely rarely sometimes often very often 20. I show empathy and understanding to my partner. ! 21. I express to my partner that I am on his/her side. ! 22. I blame my partner for not coping well enough with stress. ! 23. I tell my partner that his/her stress is not that b ad and help him/her to see the situation in a different light. ! 24. I listen to my partner and give him/her space and t ime to communicate what really bothers him/her. ! 25. I do not take my partner's stress seriously. ! 26. When my partner is stressed I tend to withdraw. ! 27. I provide support, but does so unwillingly and unmo tivated because I think that he/she should cope with his/he r problems on his/her own. ! 28. I take on things that my partner would normally do in order to help him/her out. ! 29. I try to analyze the situation together with my par tner in an objective manner and help him/her to understand and change the problem. ! 30. When my partner feels he/she has too much to do, I help him/her out. ! What you and your partner do when you are both feel ing stressed? 31. We try to cope with the problem together and search for ascertained solutions. ! 32. We engage in a serious discussion about the problem and think through what has to be done. ! 33. We help one another to put the problem in perspecti ve and see it in a new light. ! 34. We help each other relax with such things like mass age, taking a bath together, or listening to music together. ! 35. We are affectionate to each other, make love and tr y that way to cope with stress. !

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104 You have reached the end of the survey. We appreciate you taking the time to fill this out! H ow you evaluate your coping as a couple ? 36. I am satisfied with the support I receive from my partner and the way we deal with stress together. ! 37. I am satisfied with the support I receive from my p artner and I find as a couple, the way we deal with stress toget her is effective ! Dyadic Coping Inventory (DCI) Bodenmann, G. (2008). Dyadic Coping Inventory (DCI). Test manual Bern/Gšttingen: Huber Testverlag. Subscale Items Stress Communication by Oneself 1, 2, 3, 4 Stress Communication by Partner 16, 17, 18, 19 Emotion-Focused Supportive Dyadic Copipng by Onese lf 20, 21, 24 Emotion-Focused Supportive Dyadic Copipng by Partne r 5, 6, 9 Problem-Focused supportive Dyadic Coping by Oneself 23, 29 Problem-Focused supportive Dyadic Coping by Partner 8, 13 Delegated Dyadic cping by Oneself 28, 30 Delegated Dyadic Coping by Partner 12, 14 Emotion-Focused Common Dyadic Coping 34, 35 Problem-Focused Common Dyadic Coping 31, 32, 33 Evaluation of Dyadic Coping 36, 37 Aggregated Scales Dyadic Coping by Oneself 1,2,3,4 and 20 through 30 Dyadic Coping by Partner 5 through 19

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105 APPENDIX I PATIENT POST TRANSPLANT SURVEY Today's Date: __ __ /__ __ / __ __ __ __ Your Name: ________________________________________________ Your Date of Birth: __ __ /__ __ / __ __ __ __ This cover sheet will be removed to protect your privacy. Thank you for taking the time to complete this survey! Researcher Only Study ID:_____________ Dyad ID:______________

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106 Patient Post transplant Survey Packet General Instructions Please take your time and answer all questions in this survey. There are no right or wrong answers. Please select the answer that fits best for you. For some questions, you may have to write out an answer. Please write your answer carefully so we can read it. If you change your mind, draw an X through your original answer, and select a new answer. The responses you provide in this survey will not be shared with your spouse/partner. Your responses will also not impact the ongoing medical care that you will rec eive. I. Psychosocial Distress Below is list of problems people sometimes have. Read each one carefully and circle the number of the response that best describes how much that problem has distressed or bothered you during the past week. Not at All A little Bit Moder ately Quite a Bit Extre mely 1. Faintness or dizziness. # # # # # 2. Feeling no interest in things # # # # # 3. Nervousness or shakiness. # # # # # 4. Pains in heart or chest. # # # # # 5. Feeling lonely. # # # # # 6. Feeling tense or keyed up. # # # # # 7. Nausea or upset stomach. # # # # # 8. Feeling blue. # # # # # 9. Suddenly scared for no reason. # # # # # 10. Trouble getting your breath. # # # # # 11. Feelings of worthlessness. # # # # # 12. Spells of terror or panic. # # # # # 13. Numbness or tingling in parts of your body. # # # # # 14. Feeling hopeless about the future. # # # # #

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107 15. Feeling so restless you couldn't sit still. # # # # # 16. Feeling weak in parts of your body. # # # # # 17. Thoughts of ending your life. # # # # # 18. Feeling fearful. # # # # # Below is a list of difficulties people sometimes have during stressful life events. Please read each item, and then indicate how distressing each difficulty has been for you during the past week with respect to your transplant how much were you distressed or bothered by these difficulties? During the past week with respect to your transplant how much were you distressed or bothered by these difficulties? Not at all A little bit Moderately Quite a bit Extremely 1. Any reminder brought back feelings about it. 2. I had trouble staying asleep. 3. Other things kept making me think about it. 4. I felt irritable and angry 5. I avoided letting myself get upset when I thought about it or was reminded of it. 6. I thought about it when I didn't mean to. 7. I felt as if it hadn't happened or wasn't real. 8. I stayed away from reminders of it. 9. Pictures about it popped into my mind. 10. I was jumpy and easily startled. 11. I tried not to think about it. 12. I was aware that I still

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108 had a lot of feelings about it, but I didn't deal with them. 13. My feelings about it were kind of numb. 14. I found myself acting or feeling like I was back at that time. 15. I had trouble falling asleep. 16. I had waves of strong feelings about it. 17. I tried to remove it from my memory. 18. I had trouble concentrating. 19. Reminders of it caused me to have physical reactions, such as sweating, trouble breathing, nausea, or a pounding heart. 20. I had dreams about it. 21. I felt watchful and on guard. 22. I tried not to talk about it. Below is a list of some ways you may have felt or behaved. Please indicate how often you have felt this way during the past week by checking the appropriate space. Please only provide one answer to each question. During the past week: Rarely or none of the time (less then 1 day) Some or a little of the time (1 2 days) Occasionally or a moderate amount of the time (3 4 days) Most or all of the time (5 7 days) 1. I was bothered by things that usually don't bother me. 2, I did not feel like eating; my appetite was poor. 3. I felt that I could not shake off the blues even with help from my family or friends..

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109 4. I felt that I was just as good as other people 5. I had trouble keeping my mind on what I was doing. 6. I felt depressed. 7. I felt that everything I did was an effort. 8. I felt hopeful about the future. 9. I thought my life had been a failure. 10. I felt fearful. 11. My sleep was restless. 12. I was happy. 13. I talked less than usual. 14. I felt lonely. 15. People were unfriendly. 16. I enjoyed life. 17. I had crying spells. 18. I felt sad. 19. I felt that people disliked me. 20. I could not get "going." You have reached the end of the survey. We appreciate you taking the time to fill this out! Your answers are very important to us so please double check that you have answered each of the qu estions.