EXPLORING THE UTILIZATION OF PATIENT NAVIGATION DURING THE
EARLY SURVIVORSHIP STAGE OF BREAST CANCER
Megan Marie Stone
B.A., Minnesota State University Moorhead, 2009
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Master of Arts
This thesis for the Master of Arts
Megan Marie Stone
has been approved
1 lcA- \\
Stone, Megan Marie (M.A., Psychology)
Exploring the Utilization of Patient Navigation during the Early Survivorship Stage
of Breast Cancer
Thesis directed by Assistant Professor Kristin Kilboum
In the United States the number of individuals surviving cancer has been increasing
due to advancements in cancer screening and treatments. The largest group of
survivors representing these advancements is women with breast cancer. Breast
cancer survivors experience adjustment challenges and unmet needs during their
transition from patient to survivor. While most navigation programs aim to help
patients during treatment, the current study implemented a patient navigation program
during the survivorship stage of breast cancer. The intervention program was
designed to help individuals in overcoming post-treatment barriers and assist them in
completing their survivorship care plan. A mixed methods analysis approach was
used to explore the utility of the intervention. Results are exploratory and give
direction to future research.
This abstract accurately represents the content of the candidates thesis. I recommend
I dedicate this thesis to my family, who has provided their infinite support as I reach
for my dreams.
My thanks to my committee for the opportunities they have provided to me. I am
thankful for their contributions and insight on my project. I would also like to thank
Allison Costenaro and Shannon Madore for their time and support throughout the
development of my thesis. In addition, a special thanks to the AVON Foundation for
funding The Support, Education, and Navigation Following Treatment for Breast
TABLE OF CONTENTS
Quality of Life during Early Survivorship....................2
Cancer Specific Distress.....................................2
Cancer Survivors and Social Support..........................5
Communicating with Health Care Professionals Post-Treatment..6
Utilizing Survivorship Care Plans............................7
Contributions to the Literature.............................I ()
Quantitative Data Analysis
Qualitative Data Analysis..
Interpretation of Results................................33
A. AVON Process Evaluation.....................................39
LIST OF FIGURES
1 Flow Chart of Participation in the Support, Education and Navigation
Following Breast Cancer Treatment Study in Chapter 2....................16
LIST OF TABLES
1 Description of patient navigation intervention, in Chapter 2...............14
2 Characteristics of participants across subsets of the AVON
sample, in Chapter 2......................................................22
3 Means and standard deviations for outcome variables pre and post
Navigation (N=18) compared to established norms, in Chapter 2.............23
4 Rating of psychosocial assistance provided and/or referred by the
Navigator, in Chapter 3...................................................27
CHAPTER 1: INTRODUCTION
Cancer survivorship as defined by the American Cancer Society, National
Cancer Institute, and National Coalition for Cancer Survivorship begins from the
moment of diagnosis throughout life (Baker, Denniston, Haffer, & Liberatos, 2009;
Brockopp, Moe, Schreiber, & Warden, 2010). The number of individuals living
beyond their cancer diagnosis is increasing due to advancements in detection and
treatment (Rowland, Hewitt, & Ganz, 2006; Janz, Mujahid, Chung, Lantz, Hawley,
Morrow, et al., 2007). The largest group representing these advancements are w omen
with breast cancer making up 22% of the 12 million adult survivors with five year
survival rates around 90 % (Allen, Savadatti, & Gurmankin Levy, 2009; Garcia
Vivar & McQueen, 2004; Cappiello, Cunningham, Knobf, & Erdos, 2007; Chung,
Cimprich, Janz, & Mills-Wisneski, 2009; Brockopp et al., 2010). While medical
advancements have decreased the mortality rate of breast cancer patients,
psychosocial interventions to address the impact of cancer and its treatments are
lagging behind (Holland & Weiss, 2008; Mehnert, Berg, Henrich, & Herschbach,
2009). As the rate of breast cancer survivors increases there is a need for a better
understanding of how to address the various challenges associated with transitioning
to life following active cancer treatment in order to attend to patients concerns and to
improve quality of life (QoL) (Brockopp et al., 2010; Allen et al., 2009).
Quality of Life during Early Survivorship
Although some research suggests no significant disruption to QoL during the
re-entry phase for early stage cancer survivors (Smith, Stein, Mehta, Kaw, Kepner,
Buskirk, et al., 2007), many breast cancer survivors struggle to return to pre-
diagnostic functioning within the first two years after completing treatment (Baker et
al., 2009; Allen et al., 2009). For example, Ganz and colleagues found breast cancer
survivors to be high functioning in regards to their health and well-being on a general
health survey (the RAND 36-item Short Form Health Survey that assesses) compared
to other women with chronic illnesses (e.g. heart disease, diabetes) (Ganz, Coscarelli,
Fred, Kahn, Polinsky, & Petersen, 1996). However, responses to the CAncer
Rehabilitation Evaluation System (CARES) revealed these same women also reported
a number of psychosocial difficulties following their breast cancer diagnosis, such as
fears of disease recurrence and body image concerns, two and even three years post-
treatment. These results suggest that general measures of quality of life may not
capture all aspects of the post- cancer treatment experience (Ganz et al., 2005).
Cancer Specific Distress
As individuals transition from cancer patient to cancer survivor they face
several post treatment challenges (Brockopp et al., 2010; Allen et al., 2009; Cappiello
et al., 2007). Breast cancer survivors often experience a number of lingering
physical side effects such as menopausal symptoms, hair loss, fatigue, sleep
disturbance, decreased libido, hormonal imbalance, and lymphedema (Costanzo.
Lutgendorf, Mattes, Trehan, Robinson, Tewfik, et al., 2007; Chung et a]., 2009;
Cappiello et al., 2007). The presence of these complications serve as a continual
reminder of the cancer and its treatment(s) (Deimling, Kahana, Bowman, & Schaefer,
2002) and can lead to increased distress and negatively impact survivors QoL (Burg,
Lopez, Dailey, Keller, & Prendergast, 2009; Stanton, Ganz, Rowland, Meyerowitz,
Krupnick, & Sears, 2005; Allen et al., 2009; Smith et al., 2007; Cappiello et al.,
2007). While issues that impact QoL include a wide range of physical, cognitive,
emotional, and social challenges, distress specifically refers to unpleasant emotional
experiences (e.g. anxiety and depression) (Carlson & Bultz, 2003; Vachon, 2006).
Anxiety, depression, and other psychological complications associated with
emotional distress are commonly experienced throughout the cancer trajectory
(Carlson & Bultz, 2003). Approximately 35% of cancer survivors report
experiencing significant distress after treatment (Deimling et al., 2006). The level of
distress experienced during the re-entry phase is mitigated by several factors
(Deimling et al., 2006; Vachon, 2006). Typically later stages of cancer have a poorer
prognosis and require more intensive treatment, such as chemotherapy (Deimling et
al., 2006). Receiving chemotherapy has been associated with elevated levels of
distress; this maybe due to the short and long term side-effects related to this form of
treatment (Deimling et al., 2006; Mehnert et al., 2009). Post -treatment physical side
effects are also related to increased distress, especially if they are unexpected (Burg et
al., 2009; Allen et al., 2009; Smith et al., 2007; Stanton et al., 2005; Cappiello et al.,
2007). For example, survivors who are not anticipating prolonged side effects (from
treatment), such as, pain and fatigue may push themselves beyond their physical
limits trying to return to pre-treatment functioning (e.g. work) before they have fully
recovered (Stanton et al., 2005; Cappiello et ah, 2007; Janz et ah, 2007; Allen cl ah.
2009; Brockopp et ah, 2010).
As well as being unprepared to manage prolonged physical complications,
breast cancer survivors may misinterpret treatment side effects as a sign the cancer is
back (Stanton et ah, 2005; Smith et ah, 2007; Lebel, Rosberger, Edgar, & Devins,
2009). Worries about disease recurrence are often associated with anxiety and
depression that can result in increased distress during early survivorship (van den
Beuken-van everdingen, Peters, de Rijke, Shouten, van Kleef, & Patijn, 2008).
Distress caused by intrusive unpleasant thoughts, memories, and dreams about the
disease re-occurring can result in survivors viewing their cancer diagnosis as an on-
going threat (Lebel et ah, 2009; Mehnert et ah, 2009). The interaction of distress and
fear of recurrence (FOR) can lead to dysfunctional behaviors such as unnecessary
checking (e.g. excessive self- examinations) and anxious preoccupation with physical
side effects (van den Beuken-van Everdingen et ah, 2008).
Distress and FOR can interact beyond the experience of physical side-effects.
Fears of recurrence can cause survivors to worry about the possibility of having to go
through treatment again and/ or dying (Lebel et ah, 2009). In addition, some women
report concerns about the hereditary risk of breast cancer; leading to high levels of
anxiety associated with the future health of their daughters and granddaughters (Allen
et al., 2009; Ganz et al., 1996).
Although up to 35% of breast cancer survivors report significant
psychological distress and approximately 90% describe experiencing fears of disease
recurrence (Allen et al., 2009), on average only 10% of survivors are referred to
psychological services (Carlson & Bultz, 2003). By not properly addressing the
known issues experienced during early survivorship, cancer survivors are faced with a
number of stressful circumstances that increase their risk of long-term adjustment
problems (Mehnert et al., 2009; Allen et al., 2009). Research supports the
development and testing of psychosocial interventions aimed at decreasing distress
and minimizing or normalizing fear of recurrence for survivors in the early stages of
cancer survivorship (Allen et al., 2009).
Cancer Survivors and Social Support
In addition to the physical and emotional complications, the loss of social
support during the transition from cancer patient to cancer survivor can also
contribute to distress during the re-entry phase (Stanton ct al.. 2005: Costan/.o et al..
2007; Allen et al., 2009). Breast cancer survivors often describe losing the social
support safety net that was established after receiving their diagnosis (Costanzo et
al., 2007; Allen et al., 2009). For example, many survivors report significant changes
in the level of social support during the re-entry phase as compared to when they
were receiving active treatment. This change may be due to friends and loved ones
feeling that the survivor does not require continued high levels of support following
treatment completion (Stanton et al., 2005). In fact, hearing that the disease is gone
and/or treatment is complete may contribute to the decline in support due to the sense
of relief it may provide for those who accompanied the individual since the beginning
of their cancer journey (Thomas-MacLean, 2004; Stanton et al., 2005; Costanzo et al.,
2007; Chung et al., 2009).
As survivors experience a decline in social support from loved ones, there is
also a decrease in contact with health care professionals. Throughout treatment
patients have a team of medical professionals to answer questions and guide them
through the process which typically helps buffer the distress (Costanzo et al, 2007).
Losing this support is a dramatic change and can leave individuals feeling isolated
(Thomas-MacLean, 2004; Garcia Vivar & McQueen, 2004; Stanton et al., 2005;
Chung et al., 2009). Without the proper support, breast cancer survivors are at risk
for poor QoL and long-term complications (Allen et al., 2009; Janz et al., 2007).
Communicating with Health Care Professionals Post-Treatment
Another risk factor for increased distress during the re-entry phase is unmet
educational needs (Grigg, Sorbero, Mallinger, Quinn, Waterman, Brooks, et al.,
2007). Research suggests that cancer survivors feel follow-up recommendations lack
sufficient information about self-care (e.g. nutrition and exercise) (Burg et al., 2009).
In order to obtain information about their future health care, patients need to express
topics of personal concern; however, survivors describe feeling hesitant about asking
questions regarding physical and psychological distress, especially when their
medical providers fail to initiate the conversation (Ganz et al., 1996; Burg et al.,
2009; Kantsiper, McDonald, Geller, Shockney, Snyder, & Wolff, 2009). Insufficient
explanations and other communication problems with health care providers can
results in survivors lacking the necessary information to help them transition into
early survivorship (Ganz et al., 1996). These findings suggest that there is a need for
informational support from patients medical team during the re-entry phase
(Cappiello et al., 2007).
Utilizing Survivorship Care Plans
In addition to communication issues with health care providers, it is reported
that there are communication problems between providers. Although oncology teams
continue to follow cancer survivors for many years after their treatment, survivors are
also cared for by their primary care physicians (PCPs). Unfortunately, PCPs do not
always have accurate records regarding the course of cancer treatment or follow-up
recommendations (Burg et al., 2009). This lack of communication between providers
typically results in both oncologists and PCPs overlooking patients continuing needs
(e.g. coping with altered body image and feelings of abandonment) (Thomas-
MacLean, 2004; Garcia Vivar & McQueen, 2004; Kantsiper et al., 2009). Improved
communication between oncology specialists and PCPs could decrease the
ambivalence for both parties regarding patient care and assist cancer patients during
their transition into survivorship (Burg et al., 2009).
Survivorship care plans (SCPs) can aid in the communication between
patients and health care professionals. They are portable health records that are
provided to patients after they have completed treatment in order to help in the
transition process. SCPs contain information about the stage and site of cancer, type
of treatment(s) received, and follow-up care. The information for SCPs is provided
by the oncology team and shared with patients and their PCPs (Burg et al., 2009). In
addition to improving communication between medical practioners, care plans can
help survivors feel more prepared to discuss post-treatment medical issues with their
health care providers (Thomas-MacLean, 2004; Burg et al., 2009; Kantsiper et al.,
Previous research suggests the utility of SCPs. Through qualitative anal) Mb.
Kantsiper et al. (2009) found breast cancer survivors to be in favor of SCPs during the
re-entry phase of the cancer trajectory. The majority viewed the use of a SCP as a
resource to aid in the active involvement of their health care providers, specifically
their oncology team (Kantsiper et al., 2009). Another qualitative study examined
minority breast cancer survivors reactions to the Association for Clinical Oncologys
SCP. The results found participants supported the utilization of a SCP, however
many felt the template was too technical, full of medical jargon, and not specific
enough to their situation (concerns) (Burg et al., 2009). Although there are
complaints related to the format, the main barrier of using SCPs is the majority of
oncologists do not have the time required to complete SCPs and/or share the
information with patients (Burg et al., 2009; Kantsiper et al., 2009).
Patient navigation compliments existing health care services by focusing on
providing assistance, such as, helping cancer patients overcome barriers and
increasing knowledge and adherence of follow-up care recommendations (Wells,
Battaglia, Dudley, Garcia, Green, Calhoun, et al., 2008; Quillin, Tracy, Ancker.
Mustian, Ellington, Viswanath, et al., 2009). The services provided by a patient
navigator vary depending on the needs of the patient (Fischer, Sauaia, & Kutner,
2007). Common duties of a navigator outlined by the Navigator Outreach and
Chronic Disease Prevention Act include: provide health care referrals, help patients
coordinate their appointments, seek community involvement (e.g. health care centers,
hospice, patient advocacy groups, charities, etc.), inform individuals about clinical
trials, help patients overcome health care barriers, coordinate with the appropriate
health insurance programs in order to provide accurate information to patients
regarding health care coverage, and reach out to underserved populations and
promote preventative care (Darnell, 2007; Schwaderer & Itano, 2007). By identifying
barriers, navigators can help cancer survivors receive quality health care and make
decisions regarding future treatment (Darnell, 2007). Furthermore, patient navigation
as an intervention during early survivorship may be a way to address patients distress
and FOR (Wells et al., 2008; Schwaderer & Itano, 2007).
Contributions to the Literature
The majority of breast cancer survivors experience fears of disease recurrence
(Allen et al., 2009) and other physical and psychosocial challenges (e.g. chronic pain,
fatigue, anxiety, and depression) during their transition from cancer patient to
cancer survivor (Costanzo et al., 2007; Cappiello et al., 2007). Following active
treatment, breast cancer survivors also report a decline in support from their loved
ones and medical team (Stanton et al., 2005; Thomas-MacLean, 2004; Stanton et al.,
2005; Costanzo et al., 2007; Chung et al., 2009). Losing the support system that they
had come to depend on throughout their cancer journey can make this stage of the
cancer continuum lonely and overwhelming (Costanzo et al., 2007; Cappiello et al.,
2007). In order to address breast cancer survivors unique concerns and challenges
there is a need for the investigation of early survivorship interventions that focus on
improving QOL and decreasing emotional distress (Cappiello et al., 2007; Ganz et al.,
1996; van den Beuken-van Everdingen et al., 2008).
To decrease distress experienced by many cancer patients during this
transition period, individuals may need assistance understanding their treatment and
how to become more educated and involved with their follow-up care (Ledeboer et
al., 2005). Patient navigation programs may be able to provide education and
psychosocial support to breast cancer survivors during the re-entry phase leading to
higher levels of personal engagement in their care. The current project will evaluate a
patient navigation program that was implemented following the end of adjuvant
treatment in a group of breast cancer patients. The goal of the proposed study is to
summarize the findings from a series of follow-up interviews that were conducted
with the breast cancer survivors who participated in a four session post-treatment
patient navigation program.
Aim 1: Investigate the association between psychosocial distress and fear of
recurrence in breast cancer patients who have recently completed active treatment.
Research Question la: How do participants self-reported levels of distress as
measured by the Impact of Events Scale and Fear of Recurrence Scale compare to
Research Question lb: Is there a relationship between the change in Impact of Event
Scale scores (pre-distress post-distress) and the change in Fear of Recurrence Scale
scores (pre-FOR post-FOR) following involvement with a patient navigation
program during the early survivorship stage?
Aim 2: To investigate if participants perception of psychosocial assistance and/ or
referrals provided by a patient navigator during the early survivorship stage is
correlated with pre to post-intervention change in distress.
Research Question 2a: How do participants rate level of satisfaction with
psychosocial assistance and/ or referrals provided the navigator (as measured by
questions 8, 9, and 10 on the AVON Process Evaluation; see Appendix A)?
Research Question 2b: Is there a relationship between the participants perception of
psychosocial assistance and/ or referrals provided by the navigator (as measured by
questions 8, 9, and 10 on the AVON Process Evaluation; see Appendix A) and pre to
post change in cancer specific distress as measured by the Impact of Events Scale?
Research Question 2c: Is there a relationship between the participants perception of
the level of psychosocial support provided by the navigator (as measured by questions
8, 9, and 10 on the AVON Process Evaluation; see Appendix A) and pre lo post
change in fear of recurrence as measured by the Fear of Recurrence Scale?
Aim 3: Qualitatively explore concerns reported by patients following their
involvement in active cancer treatment that are not addressed by patient navigation
Research Question 3: During post-intervention interviews, what are the most
common psychosocial concerns participants reported not being addressed by the
Research Question 3: During post-intervention interviews, what are the most
common psychosocial concerns participants reported not being addressed by the
CHAPTER 2: METHODS
Support, Education and Navigation Following Breast Cancer Treatment
The Support, Education and Navigation Following Breast Cancer Treatment
Study was a pilot study aimed at addressing patients needs and concerns during early
survivorship. A primary objective of the study was to explore the feasibility of using
a patient navigation program during the re-entry phase to assist in the development of
treatment summaries and survivorship care plans. Another goal of the study was to
examine participant quality of life, self-efficacy, and adherence to follow-up care
before and after the intervention (PI: Risendal, AVON Foundation; 08-0410).
The study implemented a patient navigation program during the early
survivorship period for individuals who recently completed active treatment for breast
cancer. Participants met with the navigator a total of four times either in person or
via phone depending on individual needs. The navigation sessions were aimed ai
attending to participants concerns and unmet needs in order to increase follow-up
care adherence. During the first session, the navigator completed a needs assessment
in order to address barriers to care and provide initial referrals. The following
sessions were focused on the development and completion of their treatment
summary and survivorship care plan. At the end of the program the navigator would
assist participants in scheduling their first follow up visit. For detailed information on
each session, see Table 1. Description of patient navigation intervention.
Table 1. Description of patient navigation intervention
1st meeting (on- site) The navigator familiarized the participant to the program, collected contact information, and conducted an assessment of emotional, physical and informational needs. Depending on the results of the needs assessment the navigator would refer the patient to community resources, assist in applying for financial and medication assistance, and review follow-up care and medications. The participant was also instructed on how to obtain personal medical information that would later be used for the completion of the treatment summary and the survivorship care plan.
2nd meeting (on-site or telephone) The navigator assisted the participant in developing their own cancer treatment summary and survivorship care plan. These documents included (1) a comprehensive summary of the tumor characteristics and the patients course of treatment and (2) recommendations for follow-up care.
3 rd meeting (on-site or telephone) The navigator followed-up on the completion of the treatment summary and care plan. Further evaluation of patient needs was conducted to determine if additional referrals (to community resources) were necessary. The navigator also monitored the participant for access to medical tests and medical appointments.
4th and final meeting (on- site) The navigator discussed the conclusion of the study with the participant. First post-treatment mammogram or clinical breast exams were scheduled with the assistance of the navigator assist. Published informational material about survivorship, telephone help lines and other resources for ongoing support was provided to the patient.
(PI: Risendal, AVON Foundation; 08-0410)
To evaluate the satisfaction with the program, follow-up phone interviews
were scheduled. The phone interviews asked a series of process evaluation questions
to assess patient satisfaction with the program, inquire about current coping strategies
and any continuing needs not addressed by the navigator. The study utilized a mixed
methods approach to analyze portions of the Support, Education and Navigation
Following Breast Cancer Treatment Study.
English speaking women between the ages of 22 and 70 years old who
recently completed treatment for breast cancer (Stage 0, I, II, or III) were
approached about their interest in the AVON project. In order to be included in the
study individuals must have already undergone primary surgery or adjuvant
treatment for their cancer (or within two weeks of completion), be able to read and
sign the informed consent, and be both mentally and physically competent to answer
questions and review documents.
Due to the focus on early cancer survivorship, patients diagnosed with Stage
IV breast cancer and/or still in active treatment were excluded. Patients were also
excluded if they already completed their post-treatment mammogram and/or received
a written treatment summary and survivorship care plan. Other exclusion criteria of
the study included: being non-conversant in English, under 18 years of age, pregnant,
A total of 30 women who met the inclusion criteria agreed to participate in the
study; 25 completed the formal enrollment process. Of the 25 individuals who
enrolled in the study, 18 were eligible to be contacted for follow-up phone interviews
based on completion of the baseline and post intervention survey packets. Eight
individuals participated in the AVON Process Evaluation phone interview, see Figure
1. for more information regarding participant enrollment.
Figure 1. Flow Chart of Participation in the Support, Education and Navigation
Following Breast Cancer Treatment Study
Impact of Events Scale
The Impact of Event Scale (IES) was used to measure patient distress both
before and after involvement in the navigation program. The 15-item self-report
instrument uses a four-point Likert scale (0-not at all to 3-often) to assess
subjective distress related to a specific event (e.g. having cancer). Items on the IES
are associated with common conscious experiences of distress of any life event. The
self-report instrument is composed of intrusion and avoidance items; allowing for a
total distress score and separate scores on each of the sub-scales. Higher scores
represent more distress. The IES is commonly used for repeated measurement of
distress over time (Horowitz, Wilner, & Alvarez, 1979). Analyses of the
psychometric properties of the IES find it to be both a reliable and valid measure
across different populations and various stressors (i.e. death of a loved one, natural
disaster, threat of violence) (Sundin & Horowitz, 2002).
Fear of Recurrence Scale Short Form
Fear of recurrence was assessed pre and post intervention using a modified
version of the Northhouse Fear of Recurrence Scale. The shortened version of the
self-report instrument uses a five point Likert scale (1-strongly disagree to 5-
strongly agree) to measure fear related to the recurrence of disease (Stanton,
Danoff-Burg, & Huggins, 2002). Items are worded both positively and negatively;
reverse-scoring was conducted on the negatively worded items. A higher summary
score represents greater fear of recurrence. Previous studies of breast cancer patients
have found the modified version of the Northhouse Scale to be adequately reliable
and valid (Mellon, Kershaw, Northouse, & Freeman-Gibb, 2007).
A VON Process Evaluation
After completion of the post-intervention packets, individuals were contacted
to complete the AVON Process Evaluation. The evaluation consists of 24 statements
with a five point Likert scale (1-strongly disagree to 5 strongly agree") and eight
open ended questions about the participants opinions and experiences related to the
AVON Project, see appendix A.
Participant recruitment took place at the Dorcy Cancer Center (DCC) (at St.
Mary Corwin Hospital) in Pueblo, Colorado. The DCC is a full service Cancer
Center that treats approximately 800 cancer patients a year. With around 134 cases
each year, breast is the most common site diagnosed after prostate (157). Compared
to state and national statistics, breast cancer patients at the DCC tend to be older and
receiving hormonal therapy. While there are no noticeable differences in relation to
stage at diagnosis, with the majority of patients diagnosed with Stage 1 or II. there is a
difference in survival rates compared to national statistics. Most notable is the 5 %
lower survival rates for Stage I breast cancer. Serving an older more rural population
with higher rates of comorbid disease may account for these differences (St. Mary
Corwin Annual Report for 2007).
With the assistance of health-care providers, potential participants were
approached about their interest in the study. Interested patients were screened for
eligibility in person or over the phone using an eight question screening script. After
eligibility was determined patients received an invitation to join the study. If the
invitation was accepted, baseline assessments, informed consent documents, and
HEPAA authorization forms were either mailed with instructions to read, sign, and
complete within two weeks of receiving the materials or completed in person during
the first navigation session. No monetary incentives were provided.
After a participant was mailed the initial study materials, the patient navigator
contacted the individual to schedule the first navigator meeting; the following three
sessions varied depending on participants schedules. The meetings took place in
person at the DCC or by phone depending on the participants needs; however, the
final meeting was held on site at the DCC in order to provide the participant their
completed survivorship care plan and review the plan in detail. Post-intervention
questionnaires were mailed immediately after completion of the last navigation
session. Participants were instructed to complete the post survey packet and mail it
back within two weeks.
Following the completion of the post-intervention survey, participants were
considered eligible to be contacted to complete the AVON Process H\ aluation by
phone. As the process evaluation was not included in the original study consent, the
investigators gained Institutional Review Board (IRB) approval to seek verbal
consent from participants at the start of the survey and approval of the questions
themselves. Adhering to the protocol for the Support, Education and Navigation
Following Breast Cancer Treatment Study patients could be contacted up to three
times with a total of two messages. Messages included experimenter name, affiliation
with the University of Colorado Denver (UCD), and phone number for the 1 lealih
Psychology Lab at UCD. All of the phone interviews were recorded for future
qualitative data analysis. Each interview was approximately 20 minutes in length.
Completed interview data is currently stored in the Health Psychology Lab at UCD.
Quantitative Data Analysis
To ensure individuals who completed the post-navigation assessments and
furthermore those who participated in the AVON Process Evaluation did not differ
significantly from those at baseline, independent t-tests were conducted to explore
continuous variables and Chi-square analysis with Yates correction was used to
compare categorical characteristics. There were no statistical demographic
differences found, see Table 2. Characteristics of participants across subsets of the
AVON sample for more information.
Mean and standard deviation values were calculated in order to compare
participants self-reported level of distress (Post IES Scores) and FOR (Post FOR
Scale Scores) following navigation services to established norms. Frequency values
(and valid percentages) were used to describe participants level of satisfaction with
psychosocial assistance provided and/or referred by the navigator (as measured by
questions 8, 9, and 10 on the AVON Process Evaluation; see Appendix A). To better
understand how assistance provided through patient navigation services relates to
cancer specific distress and FOR, change scores were calculated for the IES and FOR
Scale. Change in cancer specific distress following navigation was calculated for the
18 participants who completed the post intervention assessment packet. To calculate
participants change in distress post-navigation IES Total Scores were subtracted
from pre-navigation IES Total Scores, see Table, 3. Means and standard deviations
for outcome variables pre and post navigation (N=18) compared to established norms.
Table 2. Characteristics of participants across subsets of the AVON sample_____________
Baseline (N= 25) Post-Navigation Avon Process
(N=18) Evaluation (N=8)
Characteristic_______(SD)_______/(%) (SD)________/(%) M (SD)________________/ (" )
Age (years) 55.96 (9.75) 56.06(7.99) 57.25(8.26)
White 19(86%) 16(89%) 7(88%)
Other 3(14%) 2(11%) 1(13%)
Hispanic 13(52%) 7(39%) 3(38%)
Non-Hispanic 12(48%) 11(61%) 5(63%)
< $35,000 16(76%) 10(56%) 4(67%)
$35,000 + 6(27%) 6(33%) 2(34%)
Grades 9-11 3(12%) 3 (17%) 1(13%)
Grade 12 or GED 6(24%) 3 (17%) 1(13%)
College 1-3 years 12(52%) 9 (50%) 4(50%)
College 4 + years 3(12%) 3 (17%) 2(25%)
Married 9(36%) 8 (44%) 3(38%)
Divorced 10(40%) 6 (33%) 2(25%)
Otherwise Single 6(24%) 4(23%) 3(39%)
Pre-Menopausal 6(25%) 3 (17%) 1(13%)
Menopausal 5(21%) 5 (28%) 2(25%)
Post-Menopausal 13(54%) 10(56%) 5(63%)
Stage 0 1(4%) 0 (0%) 0(0%)
Stage I 11(46%) 9 (50%) 4(50%)
Stage II 9(38%) 7 (39%) 4(50%)
Stage III 3(13%) 2(11%) 0(0%)
Type of Treatment*
Surg, Rad. 5(21%) 4 (22%) 2(25%)
Surg, Rad., Chemo 7(29%) 5 (28%) 2(25%)
Surg, Rad., HR+ 3(13%) ' 2(11%) 0(0%)
Surg, Rad., Chemo, HR+ 9(38%) 7 (39%) 4(50%)
* Percent values calculated using valid responses; rounded to nearest whole number
Table 3. Means, standard deviations and effect size for outcome variables
pre and post navigation (N=18) compared to established norms_____________
__________________________________________________M SD d
AVON IES -0.23
Pre Total Score 29.83 16.84
Post Total Score 31.67 14.77
Medical Students* 12.7 10.8
Stress Clinic Patients* 42.1 16.7
Breast Cancer Patients** 17.52 7.56
AVON FOR Scale
Pre Total Score 20.11 5.35
Post Total Score 19.28 6.03
Breast Cancer Patients 3 Months Post Treatment*** 18.49 5.93
Breast Cancer Patients 12 Months Post Treatment*** 18.35 5.06
(*Horowitz et al., 1979; **Baider & De-Nour, 1997; ***Stanton et al., 2002)
Participants (N=l 8) change in fear of recurrence following navigation was calculated
by subtracting post-navigation FOR scores from pre-navigation FOR scores (see
Table 3. Means and standard deviations for outcome variables pre and post
navigation (N=18) compared to established norms).
All assumptions of the data were originally met. However, when checking the
assumptions of the data for the individuals who completed the AVON Process
Evaluation, it was discovered that the variable Change IES Scores violated the
assumption of normality. Log transformations were completed to correct for this
Pearsons correlation analysis was conducted to determine how changes in
cancer specific distress (Pre-Post IES Scores) and FOR (Pre-Post FOR Scale Scores)
relate to each other and level of satisfaction with psychosocial assistance provided
and/or referred by the navigator (as measured by questions 8, 9, and 10 on the AVON
Process Evaluation; see Appendix A).
Qualitative Data Analysis
The responses of a select group of individuals who completed the phone
surveys were explored using ethnographic content analysis. Participants responses
to the open-ended question, What, if any, continuing concerns do you have that were
not addressed by the patient navigator, of the AVON Process Evaluation guided data
collection. Theoretical sampling examined each response for physical, psychological,
educational, and social concerns that are often reported by survivors during the re-
entry phase. Emergent coding was used to classify unique responses. Following
coding of the data, constant comparisons will be used to clarify themes of the
participants responses. Within the themes discovered queries of the data were
conducted to explore for existing patterns and relationships (Altheide, n.d.).
CHAPTER 3: RESULTS
The mean age of the 18 participants who completed the post navigation
packets was 56 years (SD= 7.99), half of the women were diagnosed with Stage I
breast cancer, 56% of the sample reported an annual income of $25,000 or less and
39% of the women identified themselves as Hispanic. As previously mentioned the
sample at post navigation follow-up (N=18) did not significantly differ from those
who completed the AVON Process Evaluation (N=8). The mean age of the eight
participants who completed the AVON Process Evaluation, was 57 years (8.26), 50%
of the sample were diagnosed with Stage I breast cancer, 38% of the women reported
an annual income of at least $25,000 and 38% of the sample identified as being
Hispanic, see Table 2 for more demographic information.
Research Question la: Following navigation services, participants IES scores on
average reflect that their cancer experience was causing them distress, (M= 31.67,
SD= 14.77, N= 18), as seen in Table 3. These IES scores are elevated compared to
other breast cancer survivors, however within the same range as female stress clinic
patients (Baider & De-Nour, 1997; Horowitz et al., 1979). Participant responses also
indicated they were experiencing fears of cancer recurrence, (M= 19.28, SD = 6.03,
N= 18). In comparison to breast cancer patients assessed 3 and 12 months post
(Stanton et al., 2002), participants FOR Scale scores were slightly elevated (see
Research Question lb: Pearsons correlation analysis did not discover a significant
relationship between change in distress and change fear of recurrence following in a
patient navigation program during the early survivorship stage of breast cancer, (r
Research Question 2a: Overall participant responses to the AVON Process
Evaluation ranged from Strongly Disagree to Strongly Agree. On average
participants responded undecided/neutral to the statement, The navigator assisted
me in getting the psychological/social support that I needed (AVON Process
Evaluation question 8), (M= 3.13, Mode= 3, N= 8). In regards to the statement, The
navigator assisted me in feeling less overwhelmed by my health issues (AVON
Process Evaluation question 9), 63% of participants responses ranged from Agree
to Strongly Agree. In response to The navigator provided emotional support
(AVON Process Evaluation question 10), the majority of participants responded
Strongly Agree, (M= 3.38, Mode= 5, N= 8). See Table 4. Rating of psychosocial
assistance provided and /or referred by the navigator.
Research Question 2b: Pearsons correlation analysis was conducted to explore the
relationships between participant responses to questions 8, 9, and 10 on the AVON
Process Evaluation and their change in cancer specific distress (Pre-Post IES Scores).
A significant relationship was not found between responses to, The navigator
assisted me in getting the psychological/social support that I needed and change
scores on the IES, (r(8)= -.24,p = .57).
Table 4. Rating of psychosocial assistance provided and/or referred by the Navigator
_______AVON Process Evaluation Question________________M(SD) Mode_________/(%)
The navigator assisted me in getting the
psychological/social support that I needed
The navigator assisted me in feeling less
overwhelmed by my health issues
The navigator provided emotional support
Additionally, Pearsons correlation analysis did not reveal a significant relationship
between responses to, The navigator assisted me in feeling less overwhelmed by my
health issues and change scores on the IES, (r(8)= -.04,/?=.92). Lastly, the
relationship between responses to, The navigator provided emotional support and
change scores on the IES was not significant, (r(8)= -.05, p = .91).
Research Question 2c: To examine the relationships between the participants
responses to questions 8, 9, and 10 on the AVON Process Evaluation and pre to post
change in fear of recurrence (Pre-Post FOR Scale Scores), Pearsons correlation
analysis was conducted. An insignificant negative relationship was found between
responses to, The navigator assisted me in getting the psychological/social support
that I needed and change scores on the FOR Scale, (r(8)= -.53, p= .18). Pearsons
correlation analysis did not reveal a significant relationship between responses to,
The navigator assisted me in feeling less overwhelmed by my health issues and
change scores on the FOR Scale, (r(8)= -.20, p =.64). Nor was there a significant
relationship between responses to, The navigator provided emotional support and
change scores on the FOR Scale, r(8)= -.24, p = .57.
Aim 3: Participants responses to the open-ended question, What, if any, continuing
concerns do you have that were not addressed by the patient navigator? of the
AVON Process Evaluation were explored using ethnographic content analysis.
Theoretical sampling examined each response for physical, psychological,
educational, and social concerns typically reported by survivors during the re-entry
Physical Concerns: Participants did not report any physical concerns that were not
addressed by the navigator. Supporting current literature, the responses indicate that
being educated about possible complications can reduce the distress and worry related
to physical side-effects from treatment.
...cause physically uh other than like 1 said the loss of mv strength,
uh everything is getting back. You know, I still have, I guess you call
em phantom pains, you know, uh that go through there and I was kind
of concerned about it and he told me you are going to feel that for a
while. So you know, as long as I know what to expect and 1 know
where I am at, I am ok.
Psychological Concerns: None of the responses indicated that participants
were experiencing any lingering psychological concerns the navigator did not
Participant: Um, None
Interviewer: None. So she talked to you about your worry?
Educational Concerns: As previously mentioned it appears that being educated may
be a way to decrease distress experienced during the re-entry phase.
So you know, as long as I know what to expect and I know where I am at, I am ok.
The responses also suggest that involvement in a patient navigation program is a way
to meet survivors educational needs.
She answered everything that I could think of to ask.
Social Concerns: There were no responses that identified specific social concerns.
When examining the responses for physical, psychological, educational, and
social concerns two additional themes emerged, Unsure and No Overall Concerns. In
general participants did not report experiencing any concerns following involvement
with the patient navigation program.
Unsure: Some individuals did not receive that same amount of face to face contact
with the navigator as others and therefore made it difficult for individuals to respond.
Hmm, I dont know. Thats hard to say I never talked with her. If I would have
talked to someone I may have an answer for you.
No Overall Concerns: Overall the responses to the AVON Process Evaluation
indicated that patient navigation helped address lingering concerns reported during
Well I think everything was taken care of. You know
You know, to be honest with you right offhand I -1 cant think of anything
Urn, I cant think of any.
It appears that providing education and probing about any possible concerns
helped these women transition into survivorship with no lingering concerns.
I cant think of anything too much that, not, because she was pretty
informative and you know asked me a lot of different questions about
you know if I had any concerns or anything so really I-1 cant say that
there was anything that I can think of right now.
From the participants responses it is hypothesized that completing a survivorship
care plan, education, and psychological support are all important aspects of a
navigation program implemented during the re-entry phase.
CHAPTER 4: DISCUSSION
Distress and FOR are commonly reported during the early survivorship stage
of cancer due to lingering physical, psychological, and informational concerns
accompanied by a decrease in social support (Stanton et ah, 2005; Cappiello et ah,
2007; Janz et ah, 2007; Allen et ah, 2009; Brockopp et ah, 2010; Costan/o et ah.
2007). As the rate of cancer survivors increase, so does the number of individuals
struggling with these concerns. The objective of the Support, Education, and
Navigation Following Treatment for Breast Cancer Study was to explore the utility of
a patient navigation program that addresses lingering concerns during the re-entry
phase of cancer treatment.
As this was a pilot project, the Support, Education and Navigation Following
Breast Cancer Treatment Study had some notable limitations. First, the external
validity of these results is limited due to the small sample size and lack of statistical
power. In addition, with such a small sample, the results may have been skewed due
to the second limitation, voluntary response bias. While participant responses
indicate that they felt the navigator properly addressed their lingering concerns,
several of the individuals who completed post-navigation assessments declined to
participate in the AVON Process Evaluation. By only having the responses of those
willing to participate, it is unknown whether or not the other individuals would have
responded in a similar fashion. For example, one participant reported not wanting to
risk experiencing distress from completing the telephone interview. This brings into
question whether the individuals who participated in the post-intervention interviews
had different concerns than those who declined to participate. Lastly, this study did
not have a control group which limits our ability to fully assess the impact of the
intervention. While distress slightly increased following the navigation intervention,
it is unknown what changes, if any, would have been observed in participants
receiving standard care and/or different type of intervention. Although the
interpretation of these results is limited, they introduce areas for future studies to
Interpretation of Results
In comparison to breast cancer survivors from previous studies, AVON
participants reported higher levels of cancer-specific distress (Baider & De-Nour,
1997). This observation may be linked to previous research which suggests an
association between lower socioeconomic status and poor physical and mental health
(Ashing-Giwa & Lim, 2009). As the majority of the women were of lower
socioeconomic status, additional factors (e.g. lack of health insurance) may have
contributed to the elevated distress observed in this sample.
Furthermore, it was predicted that involvement in patient navigation would
lead to a decrease in distress; however participants reported slightly more distress at
the time of the post navigation assessment. A possible explanation for these findings
may be that involvement in the intervention could have disrupted participants typical
coping behaviors and further increased distress (Palmer, Kagee, Coyne, &
DeMichelle, 2004). For example, having to focus on the cancer experience may have
increased intrusive thoughts, leading to more cancer specific distress. This
interpretation is based on previous research which suggests continual reminders of
cancer diagnosis and treatments are related to higher levels of
distress (Deimlinget al., 2002).
In addition, previous research has reported a strong association between
cancer specific distress and FOR during the re-entry phase of cancer survivorship
(Lebel et ah, 2009). Significance testing was conducted to explore the relationship
between pre and post-intervention changes in FOR and distress. We found no
significant relationship between these change scores. Due to the small sample, effect
sizes were also calculated since they were viewed as a more accurate measure of
change in distress and FOR following involvement in a patient navigation program.
A significant relationship was not revealed and these results suggest that emotional
distress and FOR may be separate constructs (Allen et ah, 2009). Based on the
difference in direction and magnitude of the changes on these variables, it is possible
that although the intervention resulted in a slight increase in distress, participants
obtained the necessary skills and information to prevent greater distress and higher
FOR. Furthermore, participants responses to the AVON Process Evaluation lend
support to this interpretation. For example, while the majority of participants
described experiencing post-treatment complications (e.g. phantom pains, depression,
FOR), they also reported that following involvement in the program they did not have
any lingering personal concerns not addressed by the navigator.
Fears of disease recurrence and being unprepared to address lingering physical
side effects from treatment are associated with increased distress during the re-entr\
phase (Carlson & Bultz, 2003; Brockopp et al., 2010; Allen et al., 2009; Cappiello et
al., 2007; van den Beuken-van everdingen et al., 2008). The results revealed that
over 50% of participants reported that the navigator provided adequate emotional
support. These responses suggest that enrollment in the navigation program may be
beneficial in addressing common emotional concerns (e.g. worry about disease
recurrence) reported during early survivorship. Furthermore, 63% of participants
reported that they felt the navigator assisted them in feeling less overwhelmed by
their health concerns. Overall responses to the AVON Process Evaluation imply that
participants were generally in favor of the program. However, the majority of
participants also stated that they were undecided/ felt neutral about the
psychological/ social support provided during navigation, which may suggest that not
all of their support needs were addressed by the program. This may be interpreted as
the need for improvement in certain psychosocial areas of the navigation program,
but due to the phrasing of the question it is unclear as to whether patients felt the
navigator could have provided more (and/or different) psychological or social support
Although some participants reported experiencing physical and/or
psychological complications, six or the eight women responded they did not have any
concerns that were not addressed. However, in some of the responses it was unclear
if their concerns were addressed directly by the navigator, referrals by the navigators,
or another health care professional. While some of the responses are vague, they
suggest that the navigation intervention was able to assist individuals in their
transition into early survivorship.
Due to the multiple factors that can impact distress and FOR during early
survivorship, future research should explore participant satisfaction with services
provided as well as the individuals personal need for navigation services. Different
individual needs (e.g. knowledge of follow-up care, level of resources and health
insurance status) may influence level of distress, fear of recurrence, and the potential
impact of a navigation intervention. For example, breast cancer survivors who feel
supported throughout their cancer journey may not need the same intensity of
intervention as those who have greater need and fewer psychological, social and/or
practical resources. Therefore, assessing individual need may increase our ability to
deliver these types of services to those who are in the greatest need which will also
increase the cost-effectiveness of these types of interventions.
While future research should focus on understanding individual need, it would
also be beneficial to explore which aspects of an intervention are most beneficial. For
example, in this study some of the women did not interact with the navigator as often
as others, however they did complete their survivorship care plan and remained
engaged in the program. This brings into question what aspects of patient navigation,
survivorship care plans, or the combined use of both, are the most beneficial and for
whom are they beneficial. Further research is needed to explore how to tailor
navigation interventions to individuals in order to properly address their needs and
Also, as previously mentioned, a control group should be implemented in
future designs. This could provide more insight about changes in distress and FOR
across different interventions. Beyond exploring for pre-post intervention change,
further research is needed to explore the impact of interventions during the re-entry
phase on long term QoL.
There are a growing number of individuals surviving cancer. Early
survivorship is commonly accompanied by a variety of complications that can
negatively impact QoL (Cappiello et al., 2007; Brockopp et al., 2010). For some
facing the toxicity of treatment without proper knowledge and support can lead to
long term adjustment problems (Cappiello et al., 2007; Janz et al., 2007; Allen et al.,
2009; Brockopp et al., 2010; Costanzo et al., 2007). The re-entry phase is a time for
health care providers to step in and promote behavior change to increase QoL
(Thomas-MacLean, 2004). Programs need to be established that can provide
assistance to those in need. Patient navigation may be a way to provide psychological
and social support that cancer patients are lacking during the re-entry phase. Based
on the results of the current study, one can imply that aspects of the patient navigation
program were beneficial to survivors (e.g. answering questions about lingering
concerns) and therefore further research of patient navigation interventions for early
cancer survivors should be continued.
APPENDIX A: AVON PROCESS EVALUATION
Please respond using the following scale: 1. Strongly disagree, 2. Disagree, 3.
Undecided/ neutral, 4. Agree, and 5. Strongly Agree.
1. I felt that my navigator was knowledgeable
2. The amount of time that I interacted with the navigator was just right
3. The navigator assisted me with understanding my treatment.
4. The navigator assisted me in making medical appointments
5. The navigator assisted me in dealing with financial concerns
6. The navigator assisted me in dealing with transportation concems/problems
7. The navigator assisted me in learning how to communicate with others about my
cancer diagnosis and treatment
8. The navigator assisted me in getting the psychological/social support that I needed
9. The navigator assisted me in feeling less overwhelmed by my health issues
10. The navigator provided emotional support
11. I learned about services in the community that are available to me
12. I felt comfortable sharing my thoughts and feelings with the navigator
13. I felt satisfied with the navigators preparation and explanation of the follow-up
14. I felt satisfied that the navigator answered all questions and concerns regarding
the follow-up care plan
15. I felt that I participated in the completion of the follow-up care plan
16. I feel knowledgeable about my breast cancer follow-up care regimen
17. I feel confident in my ability to comply with the follow-up care plan
18. I found the follow-up care plan helpful
19. I will share this plan with my medical team (primary care, other specialists, etc. )
20. I feel that my needs related to my past cancer diagnosis and treatment were
addressed through this program
21. I felt supported after the completion of treatment for breast cancer
22. I believe that I have the resources to address future barriers to care
23. I would recommend this program to others going through a similar situation
24. I think that this program should be continued
Open ended questions:
1. Why did you decide to enroll in this study?
2. Were you comfortable with the navigator completing the follow-up care plan as
opposed to a different medical professional?
3. What did you like best about this program?
4. What did you like least about this program?
5. What, if any, physical concerns have you experienced during this transition
a. How are you coping with these concerns?
6. What, if any, psychosocial concerns have you experienced during this transition
a. How are you coping with these concerns?
7. What, if any, continuing concerns do you have that were not addressed by the
8. How did having a patient navigator aid in your transition from cancer patient to
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