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Overcoming treatment barriers of underserved breast cancer patients

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Overcoming treatment barriers of underserved breast cancer patients
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Madore, Shannon Laura
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Breast -- Cancer -- Treatment -- Decision making ( lcsh )
Women -- Health and hygiene ( lcsh )
Breast -- Cancer -- Treatment -- Decision making ( fast )
Women -- Health and hygiene ( fast )
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bibliography ( marcgt )
theses ( marcgt )
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<ABSTRACT> Underserved populations encounter a large number of logistical, communication, medical, and psychosocial barriers which negatively impact the timeliness and quality of cancer care. The Breast Cancer Advocacy Resources Education Support (CARES) Intervention coupled a patient navigator with a psychosocial counselor to address and overcome barriers in a small population (n=20) of underserved women going through breast cancer treatment at a local "safety net" hospital. The goals of the secondary analysis of data gathered in this intervention were twofold: 1) To identify common barriers encountered by these women with a focus on understanding how the patient navigator and telephone counselor addressed these concerns; 2) To understand the relationship between patient-reported barriers and patient-reported psychosocial distress, depression, and quality of life. Data was analyzed using a mixed methods approach. Overall results indicated there is a distinction in roles between a navigator and counselor in addressing the many barriers to treatment faced by underserved breast cancer patients.
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Includes bibliographical references.
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by Shannon Laura Madore.

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Full Text
OVERCOMING TREATMENT BARRIERS OF UNDERSERVED BREAST CANCER
PATIENTS
by
Shannon Laura Madore
B.A., University of Colorado Boulder, 2008
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
Masters of Arts
Clinical Psychology Program
2012


This thesis for the Master of Arts degree by
Shannon Laura Madore
has been approved for the
Clinical Psychology Program
by
Kristin Kilboum, PhD, Chair and Advisor
Evelinn Borrayo, PhD,
Peter Raich, MD
Date
5-6-10


Madore, Shannon Laura (M.A., Clinical Psychology Program)
Overcoming Treatment Barriers of Underserved Breast Cancer Patients
Thesis directed by Associate Professor Kristin Kilboum, Ph.D.
ABSTRACT
Underserved populations encounter a large number of logistical, communication,
medical, and psychosocial barriers which negatively impact the timeliness and quality of
cancer care. The Breast Cancer Advocacy Resources Education Support (CARES)
Intervention coupled a patient navigator with a psychosocial counselor to address and
overcome barriers in a small population (n=20) of underserved women going through
breast cancer treatment at a local safety net hospital. The goals of the secondary
analysis of data gathered in this intervention were twofold: 1) To identify common
barriers encountered by these women with a focus on understanding how the patient
navigator and telephone counselor addressed these concerns; 2) To understand the
relationship between patient-reported barriers and patient-reported psychosocial distress,
depression, and quality of life. Data was analyzed using a mixed methods approach.
Overall results indicated there is a distinction in roles between a navigator and counselor
in addressing the many barriers to treatment faced by underserved breast cancer patients.
The form and content of this abstract are approved. I recommend its publication.
Approved: Kristin Kilboum, Ph.D.
m


ACKNOWLEDGMENTS
Shannon L. Madore was supported by The University of Colorado Denver
This study was funded by NIH grant R21; CA114477


TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION.............................................................1
Health care disparities of underserved breast cancer patients...........1
Logistical barriers to health for underserved populations...............1
Communication barriers to care for underserved populations..............3
Medical barriers to care for underserved populations....................4
Psychosocial barriers to care for underserved breast cancer populations.4
Interventions addressing barriers and health care disparities among underserved
breast cancer populations...............................................6
Definition and role of patient navigator................................8
Definition and role of psychosocial counselor...........................9
Contributions to the literature.........................................9
II. METHODS..................................................................12
Intervention...........................................................12
Participants...........................................................12
Procedures.............................................................13
Baseline and post treatment interviews..............................13
Patient navigator initial needs assessment..........................15
Navigator and counselor case notes..................................16
Data Analysis..........................................................16
Qualitative.........................................................16
Quantitative........................................................17
III. RESULTS..................................................................18
Participants...........................................................18
v


Qualitative.........................................................19
Logistical.......................................................20
Communication....................................................21
Medical..........................................................22
Psychosocial.....................................................23
Quantitative........................................................25
V. DISCUSSSION.............................................................27
Summary of Findings..............................................27
Limitations......................................................30
Future Research..................................................30
REFERENCES.................................................................32
APPENDIX...................................................................36
Quantitaive Psychosocial Measures................................36
vi


LIST OF TABLES
Table
III. 1 Sample characteristics of Breast CARES participants..........................18
ID. 2 Scores on psychosocial measures at baseline..................................25
IE. 3 Relationship between continuous variables and patient reported barreirs......26
III.4 Relationship between dichotomous variables and patient reported barriers......26
vii


LIST OF FIGURES
Figure
III. 1 Stage of cancer among various ethnicities included in the Breast CARES
intervention...........................................................................19


CHAPTER I
INTRODUCTION
Health care disparities of underserved breast cancer patients
In 2009 the leading cause of cancer death among Hispanic women was breast
cancer, with an estimated 2,200 deaths and 14,200 new cases. Similarly, breast cancer
was the second leading cause of cancer death among African American women, with an
estimated 6,020 deaths and 19, 540 new cases (ACS, 2009).
Despite the fact that the overall rates of breast cancer have decreased and survival
rates have increased, there are still large health disparities between ethnic minorities and
white Americans (ACS, 2009). Hispanic women are more likely to be diagnosed with
larger breast tumors than non-Hispanic white women (Miller, Hankey, & Thomas, 2002)
and Hispanic women are about 20% more likely to die of breast cancer than non-Hispanic
white women diagnosed at a similar age and stage (ACS, 2009). Furthermore, according
to the American Cancer Society in 2009, the five year survival rate for African
Americans was 77% compared to 90% for Caucasian women.
Differences in access to treatment and delays in diagnosis, both of which are
higher in low-income minority women, are likely contributors to these disparities (Bigby
& Holms, 2005). Research on health care disparities indicates that there are many
logistical, medical, and psychosocial factors which impact the timeliness and quality of
cancer care for underserved women with newly diagnosed breast cancer.
Logistical barriers to health care for underserved populations
Underserved populations encounter a large number of logistical obstacles which
can lead to delays in cancer care (Allen, Shelton, Harden, & Goldman, 2008; Borrayo,
2007; Dohan & Schrang, 2005; Davis, Darby, Likes, &Bell, 2009; Freund, Battaglia,
1


Calhoun, Dudley, Fiscella, Paskett, et al., 2008; Wells, Battaglia, Dudley, Garcia, Greene,
Calhoun, 2008). Common logistical concerns described in the literature include lack of
transportation, inadequate child care, geographic distance from treatment center, lack of
reminder systems, and scheduling issues (Allen, et al., 2008; Dohan & Schrang, 2005;
Davis et al., 2009; Freund et al., 2008; Wells et al., 2008). Other barriers include housing
issues, not enough logistical support, insufficient finances, (Freund et al., 2008), lack of
trust and negative attitudes toward health care providers (Allen et al., 2008; Dohan &
Schrang, 2005; Freund et al., 2008), lack of access to diagnostic services, lack of
information about breast cancer screening and symptoms (Allen et al., 2008), family and
work responsibilities (Ell, Vourlekis, Lee, & Xie, 2007).
Underserved populations also have to deal with problems associated with the cost
of healthcare. This may include lack of health insurance resulting from unemployment
or loss of employment, inability to afford insurance, or the inability to qualifying for
Medicare or Medicaid. Research has shown that lack of medical insurance contributes
largely to lower adherence rates and delayed care (Davis et al., 2009; Dohan & Schrang,
2005; Ell et al., 2007; Fang, Ma, Tan, & Chi, 2005; Freund et al, 2008; Wells et al. 2008).
In 2006 10.8% of non-Hispanic Whites were uninsured as compared to 20.5% of African
Americans and 34.1% of Hispanics (DeNavas-Walt, Bernadette, & Smith, 2007).
Moreover, according to Institute of Medicine these uninsured breast cancer patients face
a 50% greater chance of dying from breast cancer than patients with private coverage
(2002).
These logistical barriers lead to fragmented care and lack of treatment adherence
among underserved cancer patients. These findings emphasize the importance of
2


designing and testing interventions aimed at decreasing or minimizing some of the
logistical barriers discussed above in order to improve health outcomes in underserved
breast cancer patients.
Communication barriers to care for underserved populations
Another common obstacle which leads to health care disparities is language and
communication barriers. Non-English speakers often experience difficulties conversing
with health care professionals which can lead to a lack of understanding of medical
information and treatment recommendations as well as confusion regarding follow-up
appointments (Fang et al., 2007; Freund et al., 2008; Wells et al., 2008). Furthermore,
lack of health literacy among lower SES populations decreases the likelihood of
treatment adherence and adequate follow-up care (Ell et al., 2007; Freund et al., 2008). In
2009, a qualitative study of underserved African-American breast cancer survivors
revealed that patients often feel overwhelmed by the overall amount of medical
information that they receive, but dissatisfied in terms of the information that is
specifically associated with treatment decisions (Davis et al.). Yet another issue leading
to delayed care described by Allen and colleagues was dissatisfaction with the
communication of test results, such as receiving screening results in the form of a letter or
a phone call from an unknown person (2008). Lack of clarity of the follow up
recommendations and feeling under cared for by the health care system, are two reasons
why poor communication of test results can lead to delays in care. These widespread and
complex communication issues make overcoming language differences between health
care providers and patients difficult. Having interpreters available to patients could help
to minimize some of these problems but unfortunately, many institutions lack interpreter
3


services and do not have bi-lingual health care providers (Borrayo, 2007; Freund et al.,
2008).
Medical barriers to care for underserved populations
Many medical issues also impact underserved populations. For instance, one of
the major reasons for the observed survival disparities among African American
populations is associated with the diagnosis of cancer at a later stage of disease (ACS,
2009), diagnosis at younger ages when disease is more aggressive, and receipt of lower
quality care (Gabram, Lund, Gardner, Hatchett, Bumpers, Okoli, et al., 2008). There is
also a high rate of medical comorbidities among low SES women, which may lead to
exacerbated experience of treatment side effects, worse survival prognosis, and lower
rates of adherence. In 2007 Ell reported that in a sample of 204 underserved women 55%
had a comorbid illness, 46% were limited in the activities they could do, 36% were in
worse or much worse general health than the previous year, 27% had undiagnosed pain
symptoms, and 23% had health problems that interfered with adherence. Awareness
among health care providers of the high prevalence of comorbid medical illnesses in
underserved populations may lead to accommodations for these comorbid illnesses and
thus increased treatment adherence.
Psychosocial barriers to care for underserved populations
In addition to the logistical, medical, and communication issues encountered by
many of these women, there are a multitude of psychosocial barriers that result in delayed
care. These include emotional reaction such as fear and anxiety about diagnosis (Allen et
al., 2008; Ell et al. 2007; Freund et al., 2008), comorbid psychological disorders (Ell,
Vourlekis, Nissly, Padgett, Pineda, Sarabia, et al., 2002; Ell, Sanchez, Vourlekis, Lee,
4


Dwight-Johnson, Lagomasino, et al., 2005; Ell et al., 2007 ), lack of adequate social
support (Allen et al., 2008; Galvan, Biki, & Garces, 2009; Ell et al, 2007; Freund et al.,
2008; Wells et al., 2008), and perceptions and beliefs about treatment (Borrayo, 2007;
Davis et al., 2009; Freund et al., 2008; Galvan et al., 2009).
Despite the fact that evidence suggests that psychosocial distress may be a barrier
to cancer care leading to worse prognosis and lower quality of life, assessment of anxiety
and depression is lacking among oncologists and primary care physicians (Davis et al.,
2009; Ell et al., 2002). One explanation is that psychosocial distress is often considered
to be a normal cancer experience by medical practitioners and therefore not adequately
addressed (Vitek, Rosenzweig, & Stollings, 2007). Ell and colleagues found that only 5%
of low income breast or gynecological cancer patients who were diagnosed with major
depressive disorder received psychological treatment (2005). Part of the reason for the
lack of psychosocial intervention may be associated with the finding that those women
with the highest rates of anxiety and depression were less likely to utilize mental health
services. Ell also found that women with depression or an anxiety disorder were more
likely to have cancer (2002). In a 2007 study examining 204 underserved breast cancer
patients, Ells group reported that 50% screened positive for psychosocial distress. In a
qualitative study assessing the social support needs of Latina women with breast cancer,
Galvan explained that Latina women reported higher emotional needs as compared to
their non-Latina counterparts (2009).These findings illustrate the imperative need to
improve access to mental health care in these populations.
Additionally, lack of social support is a common psychosocial barrier. Evidence
suggests that higher levels of perceived social support from diagnosis to survivorship lead
5


to more timely breast cancer treatment (Allen et al., 2008) and lower psychosocial
distress and better adjustment to breast cancer (Galvan et al., 2009). Regarding cultural
influences, Borrayo discussed the need for more research examining the impact of
cultural factors on health beliefs and attitudes about health care in Latinas participating in
breast cancer screening and prevention programs (2007). Understanding the cultural
issues that can influence health behaviors in various underserved populations can lead to
culturally sensitive interventions that may decrease some of the barriers to both health
screening and cancer treatment.
Interventions addressing barriers and health care disparities among underserved
breast cancer populations
A wide range of interventions have been implemented to mitigate the health care
disparities of underserved medical populations. In the past few years there have been a
number of patient navigation studies (Battaglia, Roloff, Posner, & Freund, 2007; Dignan,
Burhansstipanov, Hariton, Harjo, Rattler, & Lee 2005; Ferrante, Chen, & Kim, 2008;
Giese-Davis, Bliss-Isberg, Carson, Star, Donaghy, Cordova, et al., 2006; Psooy,
Schreuer, Borgaonkar, & Caines, 2004). Some programs have combined patient
navigation with community outreach programs (Gabram et al., 2008), health education
(Fang et al., 2008; Oluwole, Ali, Adu, Blane, Barlow, Oropeza, et al., 2003), and
psychosocial counseling (Ell et al., 2002; Ell et al., 2007). The National Cancer Institute
is currently funding a multisite patient navigation research program (PNRP), which aims
to reduce delays in access to cancer care among low socio economic status and racial and
ethnic minority populations who have been diagnosed with or have had an abnormal
screening for breast, cervical, colorectal, or prostate cancer (Freund et al., 2008).
6


A review done by Wells and colleagues in 2008 evaluating the efficacy of various
patient navigation programs found that these interventions lead to a number of positive
outcomes including; a higher likelihood of timely follow-up to referral and diagnostic
resolution (Battaglia et al., 2007; Ferrante et al., 2008), increased adherence to
mammogram screening guidelines (Dignan et al., 2005); decreased levels of patient
anxiety as compared to patients who received usual care (Ferrante et al., 2008); decreased
trauma symptoms, decreased wish for breast cancer resources, and increased emotional
well-being and self-efficacy (Giese-Davis et al., 2006).
Although evidence suggests that psychosocial interventions would increase
adherence and improve health care treatment in underserved populations, there is a
paucity of research on psychosocial interventions in this area. As discussed above, the
majority of these interventions focused on the use of navigators and/or health education
program to overcome logistical obstacles to care. Although these programs have
beneficial outcomes, they fail to address the full breadth of difficulties faced by these
women.
There are a few studies, however, which have incorporated psychosocial
counseling into cancer screening (Ell et al., 2002; Ell et al., 2007). Ell and colleagues
found that implementing mental health screening and subsequent psycho-educational
counseling, navigation, and referral to community resources reduced psychological,
educational, logistical, and health systems barriers to health care adherence in
underserved women (2002). Additionally, in a randomized controlled study, Ell found
that women who had gone through a combined patient navigation and psychosocial
counseling intervention were more likely to be adherent through diagnostic resolution
7


(90% vs. 66%) and have a more timely diagnosis (77% vs. 46%) as compared to women
who received usual care (2007). These multi-disciplinary interventions addressing
psychosocial and logistical needs of underserved women have promising results and
therefore need to be further explored.
Definition and role of patient navigator
The role of the patient navigator encompasses a large array of responsibilities and
there is a lack of consensus on the definition of and qualifications for patient navigators
(Dohan & Schrang, 2005; Freund et al., 2008; Wells et al., 2008). In 2008, Freund and
colleagues defined patient navigation as support and guidance offered to persons with
abnormal cancer screening or a new cancer diagnosis in accessing the cancer care system;
overcoming barriers; and facilitating timely, quality care (pg.3392). In addition to
overcoming health system barriers, Wells expanded the description of the navigator
responsibilities to include providing health care information, addressing patient barriers
to care, and providing psychosocial support (2008). These responsibilities can be
accomplished by the navigator via following actions: coordinating care from multiple
providers (Dohan & Schrang, 2005; Freund et al., 2008; Gabram et al., 2008; Wells et al.,
2008), assisting patients with medical paper work (Wells et al., 2008), scheduling and
attending appointments (Freund et al., 2008; Wells et al., 2008), providing health
education (Dohan & Schrang, 2005; Freund et al., 2008; Gabram et al., 2008;Wells et al.,
2008), addressing psychosocial issues by referring to a counselor or cancer support group
(Wells et al., 2008), arranging forms of financial support (Freund et al., 2008), arranging
for childcare and transportation during appointments (Freund et al., 2008), and
scheduling appointments with culturally sensitive health care professionals (Freund et al.,
8


2008). Navigators also provide psychosocial support (Dohan & Schrang, 2005; Freund et
al., 2008; Gabram et al., 2008). Due to the myriad of responsibilities undertaken by
patient navigators, a division of these responsibilities between professionals such as a
psychosocial counselor would result in more comprehensive, higher quality care.
Definition and role of psychosocial counselor
The few studies which included a psychosocial counselor limited the counselor to
providing emotional support. The counselor addressed some of the common barriers by
providing brief-interactive psychoeduational counseling and referrals to community
resources (Ell et al., 2002; Ell et al., 2007). Since addressing the psychosocial obstacles is
an important aspect of quality cancer care for underserved women going through breast
cancer treatment, elucidation of the actions taken by a counselor to overcome the many
barriers they encounter to increase adherence to treatment is necessary
Contributions to the literature
This study examined The Breast CARES (Cancer Advocacy, Resources
Education and Support) intervention, which combined patient navigation with telephone
counseling to guide newly diagnosed, underserved breast cancer patients in overcoming
treatment barriers. Research has shown that these barriers may impact the timeliness and
the quality of their cancer care. The goals of the proposed secondary analysis of data
gathered in this intervention were twofold: 1) To identify common barriers encountered
by these women with a focus on understanding how the patient navigator and telephone
counselor addressed these concerns; 2) To understand the relationship between patient-
reported barriers and patient-reported psychosocial distress, depression, and quality of
9


life. In order to achieve these goals, two specific aims and three research questions
guided the analysis.
Aim 1: Understanding the roles of the navigator and counselor in the CARES
intervention in decreasing psychosocial, logistical, communication, and medical barriers
encountered by underserved breast cancer patients during the course of their cancer
treatment.
Research Question 1: What are the most common types of barriers encountered by
underserved patients undergoing breast cancer treatment?
Research Question 2: How do the patient navigator and the telephone counselor assist the
patient in overcoming the barriers? What were the similarities and difference in their
respective roles?
Aim 2: Understanding the relationship between patient demographics, patient-reported
barriers and patient-reported cancer related psychosocial variables.
Research Question 3: What is the association between number of barriers reported and
patient medical variables (stage of cancer), demographics (ethnicity, language,
insurance), and patient scores on psychosocial measures of depression, quality of life,
social support, and cancer specific distress?
Based on the reviewed literature, we expected that the common obstacles
encountered by underserved breast cancer patients participating in the CARES study will
include 1) logistical barriers such as lack of transportation, inadequate finances,
scheduling issues, child care issues; 2) communication barriers with medical staff; 3)
medical barriers such as treatment complications and side effects, comorbid medical
10


illnesses; and 4) psychosocial barriers such as negative emotional reaction to diagnosis,
lack of family and social support, comorbid mental illness.
Furthermore, consistent with the Health Care Utilization Model (Andersen and
Neuman, 1973) which provides a framework for interpretation of health care utilization
in the context of societal and individual determinants and based on the literature, we
hypothesize that depression, cancer related distress, stage of cancer, and lack of insurance
will be positively correlated with the number of barriers and social support and quality of
life will be negatively correlated to the number of patient reported barriers.
11


CHAPTER II.
METHOD
Breast Cancer Advocacy, Resources Education and Support Intervention
The study was a mixed methods analysis of the Breast CARES intervention, a
feasibility study of a multidisciplinary case management program for medically
underserved, low-income women with newly diagnosed breast cancer (PI: Raich, NIH
R21; CA114477). The goal of CARES was to conduct a pilot study to test the feasibility
and acceptability of a program utilizing both counselor-initiated telephone calls and on-
site navigator support to recently diagnosed patients receiving treatment at a local urban
safety net health care system.
The Breast CARES intervention consisted of up to 9 telephone counseling
sessions as well as up to 5 on-site and telephone-based navigation sessions. The topics
covered in the counseling sessions included decisional counseling, preparation and
coping with cancer treatment, and transitioning out of primary treatment. The topics
covered in the navigation sessions included assistance with logistical matters
(transportation, scheduling appointments, etc.), and identifying sources of financial aid
and providing informational support.
Participants
A total of 20 women, newly diagnosed with breast cancer were recruited at the
local health care system, which serves an increasingly diverse and uninsured population.
(PI: Raich, NIH R21; CA114477). Eligibility criteria included 1) a recent diagnosis of
breast cancer (Stages I, II or III), 2) receiving care at the local urban safety net hospital,
12


3) conversant in either English or Spanish, 4) ability to read and sign informed consent in
either English or Spanish.
Subjects who met the eligibility criteria were approached during their clinic visit
about their interest in study participation by the clinical nurse assisting with recruitment
to this study. Those women who were interested in participating were then consented by
the CRA. A separate consent for allowing access to protected medical information was
obtained from each consenting subject to meet HIPAA requirements. The consent process
met all of the specifications outlined by Colorado Multiple Institute Review Board. No
monetary incentive was provided for participation in this study.
Procedures
Data was collected in three modalities: 1) baseline and post intervention telephone
interviews, 2) patient navigator initial needs assessment, and 3) patient navigator and
counselor session notes.
Baseline and post intervention telephone interviews.
Telephone interviews were conducted at baseline (prior to beginning cancer
treatment) and at one month following completion of the intervention (end of primary
treatment by highly trained telephone interviewers who work in AMC Cancer Research
Centers Computer-Assisted Telephone Interviewing (CATI) Unit. Patient reported social
support, depression, cancer specific distress, and quality of life were evaluated.
Social support was measured using the Interpersonal Support Evaluation List -
12 (Cohen, Mermelstein, Karmack & Hoberman, 1985). Based on perceived availability
of social support, participants rated statements on a scale from 0 (definitely false) to 3
(definitely true).The ISEL-12 is a well-validated measure of perceived social support
13


which has demonstrated high internal consistency (alpha = .90) and is stable over time (r
=.70) (Brookings & Bolton, 1988). ISEL-12 reliability within our sample was strong
(alpha= .90)
Depression was evaluated using The Center for Epidemiologic Studies Depression
Scale (CES-D), a 20-item self report scale designed to assess depression in the general
population (Radioff, 1977). Participants were asked to rate a series of statements on a
scale from 0 (Rarely or none of the time) to 3 (More or all of the time) based on
depressive symptoms they had experienced within the last week. Scores equal to or
greater than 16 are indicative of clinical levels of psychosocial distress. The CES-D
demonstrates high levels of internal consistency (alpha=.90) and a test-retest reliability of
.45 to .70 across time (Radioff, 1977). The CES-D scale demonstrated high reliability
within our sample (alpha=.89).
The Impact of Events Scale (IES) was used to measure cancer specific distress.
The IES is a 15-item self report scale designed to evaluate avoidance and intrusion, two
major psychological responses to stressful life events (Horowitz, 1979). Based on
experiencing avoidance and intrusion of specified thoughts during the past 7 days,
participants rated each question from 0 (not at all) to 3 (often). Subscale scores are
calculated for Intrusion (7 items; alpha = .78) and Avoidance (8 items; alpha = .82).
Split-half reliability of the total scale is .86 (Horowitz, 1919). Within our sample the IES
demonstrated high reliability (alpha=.88).
Quality of life was measures using The Functional Assessment of Cancer Therapy
for Breast Cancer (FACT-B), which is a 44-item self report measure designed to measure
multidimensional quality of life in patients with breast cancer (Celia, 1993). Participants
14


were asked to rate experiences about physical well-being, social/family well-being,
emotional well-being, functional well-being, and additional concerns on a scale from 0
(Not at all) to 4 (very much). The total FACT-B score has high internal consistency
(alpha=.90) and high subscale reliability (alpha=.63 to .86) (Brady et al, 1997).
Charleston Comorbidity Index, a methodology which assigns a numerical value to
comorbid illnesses, often used to assess threat of death through treatment, was used to
quantify the risk of mortality given the presence of various comorbid conditions within
our population (Charlston, et al., 1987).
Additionally, process evaluation questions, consisting of a combination of fixed-
response and open-ended questions, were used to assess participant satisfaction at the end
of primary treatment. They included 1) Likert-type questions assessing the perceived
need for the Breast CARES program, with separate questions for the on-site navigator
component and the off-site telephone counseling component of the program; 2) Questions
evaluating the perceived satisfaction with the on-site navigator program and the off-site
telephone counseling component, with follow-up open-ended questions to provide
examples for these ratings.
Patient navigator initial needs assessment.
The navigator set the baseline interview appointment on the day of diagnosis and
sent the participant home with an appointment card reminder and paper copy of the
interview. The baseline interviews were scheduled for completion within one week of
diagnosis. Participants reported their gender, age, ethnicity, occupation, language spoken,
employment status, and whether or not they were insured at the baseline interview. The
navigator also inquired about a 10 potential barriers the patient might be concerned about
15


at baseline. These included worries about housing, insurance, work, transportation, child
care, finances, obtaining prescriptions, obtaining food, getting along with friends and
family, getting along with the medical staff, having adequate social support and having
adequate education. Number of patient reported barriers was based on the number of
barriers endorsed in the initial needs session. All data from the baseline interviews was
kept in a password protected database.
Navigator and counselor case notes.
Additionally, separate case notes about topics covered in each session were kept
by the navigator and the counselor throughout the intervention which were stored in a
password protected Microsoft Access database.
Data Analysis
Qualitative data that was collected in the navigator sessions and the telephone
counselor sessions was analyzed using qualitative ethnographic content analysis. The
quantitative data collected by the CATI interviewers was analyzed using correlational
analysis.
Qualitative analysis.
Separate case notes completed by the patient navigator and the telephone
counselor were analyzed using ethnographic content analysis. Using the methods
purported by Creswell, analysis was done by the primary qualitative analyst reading
through the case notes to identify common topics (1998). Barriers that were brought up in
the patient navigator and telephone counselor case notes as well as how these barriers
were addressed were categorized into their codes and appropriate themes were deduced
based on the research questions. The thematic coding structure was informed by the
16


aforementioned research questions as well as categories of barriers in the extant
literature.
Quantitative analysis.
Continuous demographic and medical variables will be described using mean and
standard deviation and dichotomous demographic and medical variables will be described
using frequencies. Due to the small sample size normality of data was tested by
calculating skewness and kurtosis, and an alpha level of 0.01 with an absolute value of
+2.58 was used to determine significant levels of skewness and kurtosis instead of an
absolute value of+1.96, which would generally be used with a larger sample (Field,
2005). Person correlations were then conducted between continuous variables (patient
scores on psychosocial measures, stage of cancer, and age) and number of patient
reported barriers. Point biserial correlations were conducted between dichotomous
demographic variables (insurance, language, ethnicity, and employment status) and
number of patient reported barriers. For the point biserial correlations the categories of
demographic variables were coded as 0s and ls, employment status was collapsed into
two groups retired and unemployed in group 1 and employed in group 2. Regarding
ethnicity, white and non-white categories were created and coded as 0 and 1 respectively.
17


CHAPTER III
RESULTS
Participants
The final sample included 20 women with a mean age 54.2 (SD= 12.5). With
regards to employment 55% of participants were unemployed and 25% were retired.
Furthermore 55% of our sample were uninsured, 85% were in the early stages of cancer
(I and II), and 80% spoke primarily English. During the intervention patients had an
average of 45 contacts (in person or by phone), an average of 4 (out of 5 possible)
navigation sessions and an average of 5 (out of 9 possible) telephone counselor sessions.
Information regarding their demographic characteristics as well as amount of
participation in the intervention, organized based on ethnicity, can be seen in Table III. 1.
Furthermore, how these 20 women varied in terms of stage of cancer based on their
ethnicity is illustrated by Figure III. 1.
Table III.l
Sample characteristics of Breast CARES participants (n=20)
Caucasian N (%) African American N (%) Hispanic N (%) Native American N (%) Total N (%)
Employment
Employed 0 (0%) 0 (0%) 4 (20%) 0 (0%) 4 (20%)
Unemployed 3 (15%) 3 (15%) 5 (25%) 0 (0%) 11(55%)
Retired 4 (20%) 0 (0%) 0 (0%) 1 (5%) 5 (25%)
Insurance
Insured 5 (25%) 1 (5%) 2 (10%) 1 (5%) 9 (45%)
Uninsured 2 (10%) 2 (10%) 7 (35%) 0 (0%) 11 (55%)
Stage of Cancer
I 6 (30%) 1 (5%) 5 (25%) 1 (5%) 13 (65%)
II 1 (5%) 2 (10%) 1 (5%) 0 (0%) 4 (20%)
III 0 (0%) 0 (0%) 3 (15%) 0 (0%) 3 (15%)
Primary Language
English 7 (35%) 3 (15%) 5 (25%) 1 (5%) 16 (80%)
Spanish 0 (0%) 0 (0%) 4 (20%) 0 (0%) 4 (20%)
18


Table IIL1 (cont.)
#of PN contacts M=22.86 M= 95 M=49.89 M=6 M=45
SD= 19.36 52)=89.23 SD=30.99 52)=45.03
# of PN sessions M= 3.57 M=4.67 M=4.22 M= 3 M= 4.0
52)= 1.40 SD=0.58 52)=1.30 SD= 1.08
#of TC sessions M=5.1\ M= 5.33 M=4.22 M= 4.0 M=4.95
SD=2A3 SD= 1.53 SD=2M SD=2.24
* Due to the fact that there was only 1 Native American in our sample, a SD could
not be calculated.
Figure III.1
Stage of cancer among various ethnicities included in the Breast CARES
intervention
Stage of Cancer and Ethinicty
100%-
80%
60%
40%
20%
0%-

-i:


Stage I Stage II Stage
Stage of Cancer
Native American
Hispanic
Caucasian
African American
Qualitative Analysis
Thematic analysis of the navigator and counselor case notes revealed four salient
themes of barriers. The four themes of barriers encountered by these women included
logistical, communication, medical and psychosocial. Additionally, analysis revealed
many similarities and differences in terms of actions taken by the patient navigator and
the telephone counselor to overcome the respective barriers. These actions could be
categorized into the following themes: Direct actions taken on behalf of the patient (i.e.
attending appointments with patients or providing emotional support), indirect actions
taken on behalf of the patient (i.e. coordinating care with other professionals or
community organizations), and skills training (i.e. teaching patients effective coping,
19


communication, and organization techniques). The specific themes of barriers as well as
the actions taken to overcome the various barriers are discussed below. The examples
included in the paper were selected as they are clear illustrations of a particular theme.
Logistical.
Analysis revealed a myriad of logistical barriers encountered by these women,
thus logistical barriers comprises the first theme of barriers. Examples include difficulty
finding transportation to medical appointments, inadequate finances to pay for medical
and household bills, difficulty obtaining food for ones family, lack of child care, and
lack of sufficient insurance coverage. Logistical barriers were primarily addressed by the
patient navigator. The patient navigator coordinated overcoming these barriers by helping
the patient directly, or by coordinating care with a professional, community member, or
patients family (indirectly). For example, the patient navigator meeting with the patient
to complete financial assistance forms would be a direct action and an example of an
indirect action taken on behalf of the patient by the navigator consisted of coordinating
transportation or child care. Assisting the patients daily life by addressing these barriers
helped to ensure as many resources as possible for the care of these patients. The methods
employed by the patient navigators can be seen in the below examples from various
patient navigators notes.
Patient told me [PN] ...that she wasn't used to doing all these things by herself. I
felt bad and I offered to go to her house in the afternoon and pick up the bills
myself and she agreed.
Patient called and said almost out of food. She will borrow food/money from
daughters but needs help now. [PN] to look for food banks and other
assistance.
20


[PN] spoke to Logisticare to set up transportation assistance... Patient to call
for pick up. [PN] called patient to provide transportation info.
Communication.
Communication barriers emerged as the second theme, or common issue faced by
these women. Such barriers included difficulty scheduling appointments, difficulty
communicating with physician about treatment side effects, and language barriers.
Communication issues were addressed by both the patient navigator as well as the
telephone counselor. In general, the patient navigator addressed these barriers employing
both direct and indirect actions on behalf of the patient. Indirect actions on behalf of the
patient involved communicating with other health care professionals to assist with
coordinating care and scheduling appointments. Additionally, the patient navigator spoke
with members of the community on behalf of the patient. On the other hand direct actions
implemented by the patient navigator to overcome language barriers, included attending
appointments with the patients and translating if necessary. These actions on behalf of the
patient ensured timely scheduling of follow-up appointments and increased continuity of
quality care.
[MD] didn't say anything about patient's throat, so I [PN] felt it was important
to mention it.
The telephone counselor addressed communication barriers by teaching the patients
adaptive communication skills. Such skills included clearly stating what one needs in
order to increase effectiveness when talking with their health care providers to get any
medical concerns addressed in a more timely manner. The skills also were aimed to
decrease feelings of isolation or frustration from ones family.
21


[TC] talked about being clear with others of what she needs, what is helpful, and
when she is overwhelmed by others and needs some space.
I [TC] allowed client to vent, supported her feelings and reality, and spoke
about identifying what would be helpful to her and ways to consistently
communicate that to others using T statements rather than waiting for things to
reach a breaking point.
Medical.
Analysis also revealed many medical barriers encountered by these women.
Medical barriers included making difficult treatment decisions, managing treatment side-
effects, and managing complex medication and appointment schedules. These barriers
were facilitated by both the patient navigator as well as the telephone counselor.
Regarding the treatment decisions, both the patient navigator and the telephone counselor
provided a direct outlet for the patients to discuss aspects of various treatments. Both
parties also provided additional information for the patient regarding experience of side
effects and information about relevant community resources.
The doctor went over the risks and benefits of the procedure and left the room
to give patient a chance to think about it. Patient cried and said to me [PN] she
felt sad about the prospect of losing her breasts, but she also said that she knew
this would be the recommendation given her genetic profile.
Patient talked with me [PN] about her odds and how even a small percentage
still reduces her risk. She talked it over... and said she was going to tell the
doctor to go ahead with the chemo.
However, the telephone counselor employed additional direct support to the patient in the
form of decisional counseling which involved exploring patients attitude about her
treatment decisions and expected outcomes to decrease decisional regret or distress and
feel more confident about the chosen treatment procedures. This attitude reframing
helped patients and patients families have a more positive outlook on their treatment.
22


Patient told me [TCJ she is comfortable with her decision to have the
mastectomies and keeps reminding herself of her making decisions to live and
have a chance to spend more time with her family. Husband of 8 years is very
supportive in general and of her decision. Did not react to seeing her chest when
bandages removed...
Another important way the telephone counselor addressed medical barriers was by
helping patient develop organizational systems to remind the patient about medication
and appointments. This skills training helped overcome medical adherence issues.
I [TCJ reviewed use of two strategies to help with organization. 1) Use a
calendar to track all appointments which will decrease confusion and allow her to
visualize free time that she can spend in self-care (getting out of the house, seeing
grandsons play football, etc.) 2) Write out proper use of medications and
organize medications in a medplanner
Psychosocial.
The fourth theme of barriers revealed by the analysis encompassed psychosocial
barriers such as negative emotional reaction and poor emotional adjustment to illness.
The emotional reactions to illness and treatment reported by these women which included
fear, anxiety, embarrassment, anger, frustration, denial, and depression, could lead to
avoidance of treatment negatively impacting treatment outcomes. Another important
psychosocial barrier that emerged in the case notes was insufficient social support.
Patient called me [PN] and she was crying. She said she's not ready to have the
surgery andfeel really scared.
Patient also talked to me [TCJ some about fear of losing her hair if she has to
undergo chemo therapy. Her hair is very important to her, part of her identity.
Patient realizes that she has been in denial regarding having breast cancer, and
has not allowed herself to focus on this and what it truly means for her.
Psychosocial barriers were addressed by the patient navigator and the telephone
counselor through direct actions as well as skills training; however the mechanism in
23


which they were addressed differed, reflecting the different training of the two
professionals. As seen in the excerpts below, the patient navigator mainly took direct
actions such as providing emotional support and referral resources.
[PN] spoke with patient at start of her first chemo. Patient was crying and
fearful. [PN] gave emotional support.
Daughter given referrals [by PN] for emotional support- Mental Health Center
of Denver, Cancer Information and Counseling Line, and Cancer Information
Service.
While the telephone counselor also provided emotional support, development and
utilization of adaptive coping behaviors skills and organizational skills were techniques
implemented to increase the patients effectiveness for dealing with these negative
emotions and overcome barriers.
I [PC] reviewed some other forms of distraction as well other relaxation
techniques such as massage, deep breathing and muscle tension and relaxation.
Client sounded very interested and will practice these techniques.
Additionally, the telephone counselor aided with identification of sources of social
support and education about situations where different types of support would be more
helpful than others. The telephone counselor also connected the women who expressed
interest to breast cancer support groups. Development of strong social support systems
assisted in overcoming emotional barriers by providing an additional source of emotional
support as well as people to help with logistical issues to decrease the patients feelings
of anxiety and distress. Also by being connected to support groups women can be
exposed to others experiences who have gone through treatment and perhaps see the
journey in a less overwhelming light.
I [TC] discussed the different types of supports, and examining her relationships
and identifying who might be helpful in which areas.
24


Patient reports no current social supports other than her cat, and is very
interested in joining one or more support groups.. .1 [TCJ gave information about
a group to join.
Quantitative Analysis
During the initial patient navigator needs assessment, there were 10 possible
barriers that could be reported. The average number reported assessment was 2.6 (SD =
2.35). Additionally the respective baseline scores of the 20 women on the psychosocial
measures are displayed in Table III. 2. Notably the mean score on the CES-D was above
the clinical significance cut off of 18, indicating that on average these women were
clinically depressed during the pre treatment phase.
Table III.2
Scores on psychosocial measures at baseline
N Mean SD Range
Depression (CES-D) 19 22.94 15.19 0-51
Cancer Specific Distress (IES) 20 37.87 11.50 17-57
Social Support (ISEL) 19 33.26 11.05 15-48
Quality of Life (FACTB) 15 100.60 17.93 58-135
Barriers Reported 20 2.6 2.35 0-8
Correlational analysis revealed no significant associations between number of
barriers reported and patient medical variables (stage of cancer, comorbid medical
illness), demographics (age, ethnicity, language, insurance), or patient scores on
psychosocial measures of quality of life or cancer specific distress. However, depression
was positively associated with number of barriers (r =.617, p<05) and social support was
negatively related to number of barriers (r = -.46, p=.05). These Pearson Correlation
coefficients and point biserial correlation coefficients are displayed in Table III.3 and
Table III.4, respectively.
25


Table III.3
Relationship between continuous variables and patient reported barriers
N Pearson Correlation Coefficient Significance
Depression (CES-D) 19 .62* .01
Cancer Specific Distress (IBS) 19 .21 .45
Social Support (ISEL) 19 -.46* .05
Quality of Life (FACTB) 15 -.30 .28
Comorbidity Index 15 .25 .38
Stage of Cancer 20 .18 .46
Age 20 -.31 .18
Table III.4
Relationships between dichotomous variables and patient reported barriers
N Point Biserial Correlation Coefficient Significance
Insurance 20 -.19 .41
Employment 20 -.08 .75
Language 20 .32 .17
Ethnicity 20 -.30 .19
26


CHAPTER IV
DISCUSSION
Summary of Findings
A wide array of barriers impact the quality of cancer care for underserved and
ethnic minority patients. Based on the analysis, four themes of barriers: logistical,
communication, medical, and psychosocial, were encountered by these women. These
themes of barriers are reflective of the common barriers described in the literature (Allen,
et al., 2008; Borrayo, 2007; Dohan & Schrang, 2005; Davis et al., 2009; Ell et al. 2007;
Freund et al., 2008; Galvan et al., 2009; Wells et al., 2008).
Consistent with the literature, we found the patient navigators typically addressed
logistical and communication barriers as well as provided referrals for community
services and emotional support for psychosocial barriers (Dohan & Schrang, 2005;
Freund et al., 2008; Gabram et al., 2008; Wells et al., 2008). Moreover, navigators in our
intervention provided translation services for some of the patients and health care
providers. Although this was outside the scope of the patient navigators responsibilities,
this speaks to the institutional need for translators and could represent an additional area
of training or qualification consideration for patient navigators.
In addition, this study contributed to defining the role of a psychosocial telephone
counselor in overcoming barriers in the context of a navigation program. This role
consisted of providing emotional support for the women as well as providing skills
training, with an emphasis on communication, organization, adaptive coping behaviors,
and identification of sources of social support. These skills in turn empowered the
patients to be more active participants in their health care experience. As supported by
27


the literature, negative emotional reactions to cancer diagnosis and treatment as well as
inadequate social support can negatively impact treatment outcomes and thus are
conceptualized as barriers to care (Allen et al., 2008; Ell et al., 2007; Freund et al., 2008;
Galvan et al., 2009). Use of psychosocial skills training to overcome negative emotional
reactions to treatment such as fear, anxiety, and depression will likely increase the
timeliness of treatment and adherence to follow-up recommendations (Davis et al., 2009;
Ell et al., 2002). These findings expanded upon Ell and colleagues definition of a
psychosocial counselor in terms of more clearly defining specific types of
psychoeducational skills taught by the counselor to help these women overcome
psychosocial barriers to care.
Our findings demonstrate the unique and complementary roles for patient
navigators and counselors in addressing the many barriers faced by underserved breast
cancer patients. Regarding the differences in their roles, patient navigators tended to
address barriers by taking certain types of direct actions such as meeting with the patient
to complete forms and indirect actions such as coordination with other professionals on
behalf of the patient, while the telephone counselor mainly provided skills training.
However, both health care professionals provided direct emotional support.
Although our hypotheses were not met regarding the relationship of barriers to
psychosocial variables (cancer related distress, quality of life), demographic variables
(insurance status, ethnicity, age, language spoken) and stage of cancer, the significant
relationship between the number of patient reported barriers and depression represents a
noteworthy finding. Given the high level of psychological comorbidities in underserved
populations (Ell et al., 2002; Ell et al., 2005; Ell et al., 2007) and the link between
28


psychosocial comorbidities and increased cancer mortality (Spiegel & Geise-Davis,
2003) these findings are indicative that interventions focused on overcoming barriers to
care for these populations are especially important. Although we cannot infer causality
based on our findings, the strong association between depression and number of patient
reported barriers speaks to the fact that psychosocial interventions in this population are
necessary to bridge the gap between health disparities in this population. As suggested by
the Institute of Medicine report in 2007, oncology treatment teams must broaden their
focus to include psychosocial interventions. Also the negative relationship between social
support and number of patient reported barriers is another important finding. Women
who have social support report better adjustment to breast cancer (Parker, Bade, De Moor
& Cohen, 2003). Thus interventions aimed at identifying social support sources (e.g.
family or support groups) and connecting patients to these sources can be extremely
beneficial to increase quality of life in underserved women going through breast cancer
treatment.
Our findings indicate that patient navigators and telephone counselors addressed
problems differently based on their respective professional training and the patient likely
benefited from these different approaches. The patient navigators and the telephone
counselors also worked in conjunction, referring patients to one another based on the
patients needs. This interdisciplinary collaboration was a useful model to ensure patients
get the most comprehensive care possible. Understanding the importance of the patient
navigator and telephone counselors roles has implications for future programs aimed at
improving healthcare outcomes in underserved cancer populations
29


Limitations
The lack of significant relationships between the number of barriers and the
psychosocial and demographic variables could be due to the relatively small sample of 20
women. Also there was not a lot of variability in the patient reported barriers, which may
have impacted our findings. Another consideration when interpreting these results is the
method in which the barriers were reported and conceptualized by the patient navigator
and counselor. This could result in some bias regarding how the barriers and their
subsequent resolution were reported. Finally, there was no set measure used to
quantitatively assess number of barriers, rather a preconceived set of questions. Arguably,
this would not leave patients room to report barriers other than those asked in the initial
needs assessment. Despite these aforementioned limitations, our analysis evaluated a rich
data set with data collected by multiple sources in various modalities, resulting in a
multidimensional representation of these womens experiences.
Future Research
Future studies should examine the relative importance of the patient navigator and
telephone counselor in decreasing barriers and empowering patients to utilize adaptive
coping skills. One important question that should be considered is whether the telephone
counselor addressed the psychological issues and comorbidities more than the patient
navigator. If so, can we tailor training of navigators to address such comorbidities or is it
necessary to include psychosocial counseling as a standard of care for these individuals
going through cancer treatment. For example, navigators could be trained to recognize
certain psychosocial comorbidities or issues and refer to a counselor or psychologist
designated within the health care setting to work with these women.
30


Finally, when assessing barriers to health care utilization one must consider
individual characteristics, provider characteristics, as well as institutional characteristics,
and the barriers that may arise in any of those contexts. This study mainly focused on
personal and some institutional characteristics, however when exploring implementation
of navigation interventions, future research could broaden the scope to address
practitioner barriers or a combination thereof.
31


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35


APPENDIX
Quantitiave Psychosocial Measures
Interpersonal Support Evaluation List
1. If I wanted to go on a trip for a day (for example, to the country or mountains), I
would have a hard time finding someone to go with me.
1. definitely false 2. probably false 3. probably true 4. definitely true
2.1 feel that there is no one I can share my most private worries and fears with.
1. definitely false 2. probably false 3. probably true 4. definitely true
3. If I were sick, I could easily find someone to help me with my daily chores.
1. definitely false 2. probably false 3. probably true 4. definitely true
4. There is someone I can turn to for advice about handling problems with my
family.
1. definitely false 2. probably false 3. probably true 4. definitely true
5. If I decide one afternoon that I would like to go to a movie that evening, I could
easily find someone to go with me.
1. definitely false 2. probably false 3. probably true 4. definitely true
6. When I need suggestions on how to deal with a personal problem, I know
someone I can turn to.
1. definitely false 2. probably false 3. probably true 4. definitely true
7.1 don't often get invited to do things with others.
1. definitely false 2. probably false 3. probably true 4. definitely true
8. If I had to go out of town for a few weeks, it would be difficult to find someone
who would look after my house or apartment (the plants, pets, garden, etc.).
1. definitely false 2. probably false 3. probably true 4. definitely true
36


9. If I wanted to have lunch with someone, I could easily find someone to join me.
1. definitely false 2. probably false 3. probably true 4. definitely true
10. If I was stranded 10 miles from home, there is someone I could call who could
come and get me.
1. definitely false 2. probably false 3. probably true 4. definitely true
11. If a family crisis arose, it would be difficult to find someone who could give me
good advice about how to handle it.
1. definitely false 2. probably false 3. probably true 4. definitely true
12. If I needed some help in moving to a new house or apartment, I would have a
hard time finding someone to help me.
1. definitely false 2. probably false 3. probably true 4. definitely true
CENTER FOR EPIDEMIOLOGIC STUDIESDEPRESSION SCALE
Rarely or none of the time (less than 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)
During the past week: 0 1 2 3
1)1 was bothered by things that usually dont bother me 0 1 2 3
2) I did not feel like eating; my appetite was poor 0 1 2 3
3) I felt that I could not shake off the blues even with help from my family and friends 0 1 2 3
4) I felt that I was just as good as other people 0 1 2 3
5) I had trouble keeping my mind on what I was doing 0 1 2 3
6) I felt depressed 0 1 2 3
7) I felt that everything I did was an effort 0 1 2 3
37


8) I felt hopeful about the future 0 1 2 3
9) I thought my life had been a failure 0 1 2 3
10) I felt fearful 0 1 2 3
11) My sleep was restless 0 1 2 3
12) I was happy 0 1 2 3
13) I talked less than usual 0 1 2 3
14) I felt lonely 0 1 2 3
15) People were unfriendly 0 1 2 3
16) I enjoyed life 0 1 2 3
17) I had crying spells 0 1 2 3
18)1 felt sad 0 1 2 3
19) I felt that people disliked me 0 1 2 3
20) I could not get going 0 1 2 3
Impact of Events Scale
Below is a list of comments made by people after stressful life events. Please mark each
item, indicating how frequently these comments were true for you during the past seven
days. If they did not occur during that time, please mark the "not at all" column.
Select only one answer per row.
Not at all Rarely Sometimes Often
I thought about it when I didn't mean to. 0 1 3 5
I avoided letting myself get upset when I though about it or was reminded about it. 0 1 3 5
I tried to remove it from memory. 0 1 3 5
I had trouble falling asleep or staying asleep because of pictures or thoughts about it that came to my mind. 0 1 3 5
I had waves of strong feelings about 0 1 3 5
38


it.
6. I had dreams about it.
^ I stayed away from reminders about
it.
g I felt as if it hadn't happened or was
un real.
9. I tried not to talk about it.
1 Pictures about it popped into my
mind.
j I Other things kept making me think
about it.
I was aware that I still had a lot of
12. feelings about it, but I didn't deal
with them.
13. I tried not to think about it.
^ Any reminder brought back feelings
about it.
1 My feelings about it were kind of
numb.
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
0 1 3 5
The Functional Assessment of Cancer Therapy for Breast Cancer
PHYSICAL WELL-BEING
I have a lack of energy..............................01234
I have nausea........................................0 12 3 4
Because of my physical condition, I have trouble
meeting the needs of my family.......................0 12 3 4
I have pain..........................................0 12 3 4
I am bothered by side effects of treatment...........0 12 3 4
I feel ill...........................................0 12 3 4
I am forced to spend time in bed.....................0 1234
SOCIAL/FAMILY WELL-BEING
I feel close to my friends...........................0 1234
I get emotional support from my family...............0 12 3 4
I get support from my friends........................01234
My family has accepted my illness....................0 12 3 4
I am satisfied with family communication about my
illness..............................................0 12 3 4
I feel close to my partner (or the person who is my
main support)........................................0 1234
I am satisfied with my sex life...................... 0 12 3 4
39


EMOTIONAL WELL-BEING
I feel sad..........................................0 12 3 4
I am satisfied with how I am coping with my illness.01234
I am losing hope in the fight against my illness....0 1 2 3 4
I feel nervous......................................0 1234
I worry about dying.................................0 1234
I worry that my condition will get worse............0 12 3 4
FUNCTIONAL WELL-BEING
I am able to work (include work at home)............0 12 3 4
My work (include work at home) is fulfilling........0 1 2 34
I am able to enjoy life.............................0 1234
I have accepted my illness..........................0 12 3 4
I am sleeping well..................................0 12 3 4
I am enjoying the things I usually do for fun.......0 12 3 4
I am content with the quality of my life right now..01 234
ADDITIONAL CONCERNS
I have been short of breath.........................0 12 3 4
I am self-conscious about the way I dress...........0 1 2 34
One or both of my arms are swollen or tender........0 1 2 34
I feel sexually attractive..........................0 12 3 4
I am bothered by hair loss..........................0 12 3 4
I worry that other members of my family might
someday get the same illness I have.................0 1234
I worry about the effect of stress on my illness....0 1 2 34
I am bothered by a change in weight.................0 1234
I am able to feel like a woman......................0 12 3 4
I have certain parts of my body where I experience
significant pain....................................0 12 3 4
40


41


Full Text

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OVERCOMING TREAT MENT BARRIERS OF UNDERSERVED BREAST CANCER PATIENTS by Shannon Laura Madore B.A., University of Colorado Boulder, 2008 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 Masters of Arts Clinical Psychology Program 2012

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This thesis for the Master of Arts degree by Shannon Laura Madore has been approved for the Clinical Psychology Program by Kristin Kilbourn, PhD, Chair and Advis or Evelinn Borrayo, PhD, Peter Raich, MD Date ___ 5 6 10 ___

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iii Madore, Shannon Laura (M.A., Clinical Psychology Program) Overcoming Treatment Barriers of Underserved Breast Cancer Patients Thesis directed by Associate Professor Kristin Kilbourn, Ph .D. ABSTRACT Underserved populations encounter a large number of logistical, communication, medical, and psychosocial barriers which negatively impact the timeliness and quality of cancer care. The Breast Cancer Advocacy Resources Education Support (CARES ) Intervention coupled a patient navigator with a psychosocial counselor to address and overcome barriers in a small population (n=20) of underserved women going through The goals of the secondary a nalysis of data ga thered in this intervention were twofold: 1) To identify common barriers encountered by these women with a focus on understanding how the patient navigator and telephone counselor addressed these concerns; 2) To understand the relationshi p between patient reported barriers and patient reported psychosocial distress, depression, and quality of life. Data was analyzed using a mix ed methods approach. Overall results indicated there is a distinction in roles between a navigator and counselor i n addressing the many barriers to treatment faced by underserved breast cancer patients. The form and content of this abstract are approved. I recommend its publication. Approved: Kristin Kilbourn, Ph.D.

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iv ACKNOWLEDGMENTS Shannon L. Madore was supported by The University of Colorado Denver This study was funded by NIH grant R21; CA114477

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v TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................ ................................ ................................ ....... 1 Health care disparities of underserved breast cancer pat ients ................................ 1 Logistical barriers to health for underserved populations ................................ ....... 1 Communication barriers to care for underserved populations ............................... 3 Medical barriers to care for underserved populations ................................ ............ 4 Psychosocial barriers to care for underserved breast cancer populations ............... 4 Interventions addressing barriers and health care disparities among underserved breast cancer populations ................................ ................................ ....................... 6 Definition and role of patient navigator ................................ ................................ 8 Definition and role of psychosocial counselor ................................ ...................... 9 Contributions to the literature ................................ ................................ ................. 9 II. METHODS ................................ ................................ ................................ ................ 12 Intervention ................................ ................................ ................................ ........... 12 Participants ................................ ................................ ................................ ............ 12 Procedures ................................ ................................ ................................ ............. 13 Baseline and post treatment interviews ................................ ........................... 13 Patient navigator initial needs assessment ................................ ...................... 15 Navigator and counselor case notes ................................ ................................ 16 Data Analysis ................................ ................................ ................................ ....... 16 Qualitative ................................ ................................ ................................ ....... 16 Quantitative ................................ ................................ ................................ ..... 17 III. RESULTS ................................ ................................ ................................ ................... 18 Participants. ................................ ................................ ................................ ........... 18

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vi Qualitative ................................ ................................ ................................ ............. 19 Logistical ................................ ................................ ................................ ........ 2 0 Communication ................................ ................................ ............................... 2 1 M edical ................................ ................................ ................................ ........... 22 Psychosocial ................................ ................................ ................................ .... 23 Quantitative ................................ ................................ ................................ ........... 25 V. DISCUSSSION ................................ ................................ ................................ ............ 27 Summary of Findings ................................ ................................ ...................... 27 Limitations ................................ ................................ ................................ ...... 30 Future Research ................................ ................................ .............................. 30 REFERENCES ................................ ................................ ................................ ................. 32 APPENDIX ................................ ................................ ................................ ...................... 36 Quantitaive P sychosocial Measures ................................ ................................ 36

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vii LIST OF TABLES T able I II .1 Sample characteristics of Breast CARES participants ................................ ............ 18 I II .2 Scores on psychosocial measures at baseline ................................ ........................... 25 II I.3 Relationship between continuous variables and patient reported barreirs ............... 26 II I.4 Relationship between dichotomous variables and patient reported barriers ........... 26

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viii LIST OF FIGURES Figure II I.1 Stage of cancer among various ethnicities included in the Breast CARES intervention ................................ ................................ ................................ ....................... 19

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1 CHAPTER I INTRODUCTION Health care dispar ities of underserved breast cancer patients In 2009 the leading cause of cancer death among Hispanic women was breast cancer, with an estimated 2,200 deaths and 14,200 new cases. Similarly, breast cancer was the second leading cause of cancer death among A frican American women, with an estimated 6,020 deaths and 19, 540 new cases (ACS, 2009). Despite the fact that the overall rates of breast cancer have decreased and survival rates have increased, there are still large health disparities between ethnic min orities and white Americans (ACS, 2009). Hispanic women are more likely to be diagnosed with larger breast tumors than non Hispanic white women (Miller, Hankey, & Thomas, 2002) and Hispanic women are about 20% more likely to die of breast cancer than non H ispanic white women diagnosed at a similar age and stage (ACS, 2009). Furthermore, according to the American Cancer Society in 2009, the five year survival rate for African Americans was 77% compared to 90% for Caucasian women. Differences in access to tr eatment and delays in diagnosis, both of which are higher in low income minority women, are likely contributors to these disparities (Bigby & Holms, 2005). Research on health care disparities indicates that there are many logistical, medical, and psychosoc ial factors which impact the timeliness and quality of cancer care for underserved women with newly diagnosed breast cancer. Logistical barriers to health care for underserved populations Underserved populations encounter a large number of logistical obst acles which can lead to delays in cancer care (Allen, Shelton, Harden, & Goldman, 2008; Borrayo, 2007; Dohan & Schrang, 2005; Davis, Darby, Likes, &Bell, 2009; Freund, Battaglia,

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2 Calhoun, Dudley, Fiscella, Paskett, et al., 2008; Wells, Battaglia, Dudley, G arcia, Greene, Calhoun, 2008). Common logistical concerns described in the literature include lack of transportation, inadequate child care, geographic distance from treatment center, lack of reminder systems, and scheduling issues (Allen, et al., 2008; Do han & Schrang, 2005; Davis et al., 2009; Freund et al., 2008; Wells et al., 2008). Other barriers include housing issues, not enough logistical support, insufficient finances, (Freund et al., 2008), lack of trust and negative attitudes toward health care p roviders (Allen et al., 2008; Dohan & Schrang, 2005; Freund et al., 2008), lack of access to diagnostic services, lack of information about breast cancer screening and symptoms (Allen et al., 2008), family and work responsibilities (Ell, Vourlekis, Lee, & Xie, 2007). Underserved populations also have to deal with problems associated with the cost of healthcare. This may include lack of health insurance resulting from unemployment or loss of employment, inability to afford insurance, or the inability to q ualifying for Medicare or Medicaid. Research has shown that lack of medical insurance contributes largely to lower adherence rates and delayed care (Davis et al., 2009; Dohan & Schrang, 2005; Ell et al., 2007; Fang, Ma, Tan, & Chi, 2005; Freund et al, 200 8; Wells et al. 2008). In 2006 10.8% of non Hispanic Whites were uninsured as compared to 20.5% of African Americans and 34.1% of Hispanics (DeNavas Walt, Bernadette, & Smith, 2007). Moreover, according to Institute of Medicine these uninsured breast cance r patients face a 50% greater chance of dying from breast cancer than patients with private coverage (2002). These logistical barriers lead to fragmented care and lack of treatment adherence among underserved cancer patients. These findings emphasize the importance of

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3 designing and testing interventions aimed at decreasing or minimizing some of the logistical barriers discussed above in order to improve health outcomes in underserved breast cancer patients. Communication barriers to care for underserved po pulations Another common obstacle which leads to health care disparities is language and communication barriers. Non English speakers often experience difficulties conversing with health care professionals which can lead to a lack of understanding of medic al information and treatment recommendations as well as confusion regarding follow up appointments (Fang et al., 2007; Freund et al., 2008; Wells et al., 2008). Furthermore, lack of health literacy among lower SES populations decreases the likelihood of tr eatment adherence and adequate follow up care (Ell et al., 2007; Freund et al., 2008). In 2009, a qualitative study of underserved African American breast cancer survivors revealed that patients often feel overwhelmed by the overall amount of medical infor mation that they receive, but dissatisfied in terms of the information that is specifically associated with treatment decisions (Davis et al.). Yet another issue leading to delayed care described by Allen and colleagues was dissatisfaction with the communi cation of test results, such as receiving screening results in the form of a letter or a phone call from an unknown person (2008). Lack of clarity of the follow up recommendations and feeling under cared for by the health care system, are two reasons why p oor communication of test results can lead to delays in care. These widespread and complex communication issues make overcoming language differences between health care providers and patients difficult. Having interpreters available to patients could help to minimize some of these problems but unfortunately, many institutions lack interpreter

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4 services and do not have bi lingual health care providers (Borrayo, 2007; Freund et al., 2008). Medical barriers to care for underserved populations Many medical is sues also impact underserved populations. For instance, one of the major reasons for the observed survival disparities among African American populations is associated with the diagnosis of cancer at a later stage of disease (ACS, 2009), diagnosis at you nger ages when disease is more aggressive, and receipt of lower quality care (Gabram, Lund, Gardner, Hatchett, Bumpers, Okoli, et al., 2008). There is also a high rate of medical comorbidities among low SES women, which may lead to exacerbated experience o f treatment side effects, worse survival prognosis, and lower rates of adherence. In 2007 Ell reported that in a sample of 204 underserved women 55% had a comorbid illness, 46% were limited in the activities they could do, 36% were in worse or much worse general health than the previous year, 27% had undiagnosed pain symptoms, and 23% had health problems that interfered with adherence. Awareness among health care providers of the high prevalence of comorbid medical illnesses in underserved populations may lead to accommodations for these comorbid illnesses and thus increased treatment adherence. Psychosocial barriers to care for underserved populations In addition to the logistical, medical, and communication issues encountered by many of these women, ther e are a multitude of psychosocial barriers that result in delayed care. These include emotional reaction such as fear and anxiety about diagnosis (Allen et al., 2008; Ell et al. 2007; Freund et al., 2008), comorbid psychological disorders (Ell, Vourlekis, Nissly, Padgett, Pineda, Sarabia, et al., 2002; Ell, Sanchez, Vourlekis, Lee,

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5 Dwight Johnson, Lagomasino, et al., 2005; Ell et al., 2007 ), lack of adequate social support (Allen et al., 2008; Galvan, Biki, & Garces, 2009; Ell et al, 2007; Freund et al., 2 008; Wells et al., 2008), and perceptions and beliefs about treatment (Borrayo, 2007; Davis et al., 2009; Freund et al., 2008; Galvan et al., 2009). Despite the fact that evidence suggests that psychosocial distress may be a barrier to cancer care leading to worse prognosis and lower quality of life, assessment of anxiety and depression is lacking among oncologists and primary care physicians (Davis et al., 2009; Ell et al., 2002). One explanation is that psychosocial distress is often considered to be a addressed (Vitek, Rosenzweig, & Stollings, 2007). Ell and colleagues found that only 5% of low income breast or gynecological cancer patients who were diagnosed with major dep ressive disorder received psychological treatment (2005). Part of the reason for the lack of psychosocial intervention may be associated with the finding that those women with the highest rates of anxiety and depression were less likely to utilize mental health services. Ell also found that women with depression or an anxiety disorder were more likely to have cancer (2002). In a 2007 study examining 204 underserved breast cancer tress. In a qualitative study assessing the social support needs of Latina women with breast cancer, Galvan explained that Latina women reported higher emotional needs as compared to their non Latina counterparts (2009).These findings illustrate the impera tive need to improve access to mental health care in these populations. Additionally, lack of social support is a common psychosocial barrier. Evidence suggests that higher levels of perceived social support from diagnosis to survivorship lead

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6 to more tim ely breast cancer treatment (Allen et al., 2008) and lower psychosocial distress and better adjustment to breast cancer (Galvan et al., 2009). Regarding cultural influences, Borrayo discussed the need for more research examining the impact of cultural fact ors on health beliefs and attitudes about health care in Latinas participating in breast cancer screening and prevention programs (2007). Understanding the cultural issues that can influence health behaviors in various underserved populations can lead to culturally sensitive interventions that may decrease some of the barriers to both health screening and cancer treatment. Interventions addressing barriers and health care disparities among underserved breast cancer populations A wide range of intervent ions have been implemented to mitigate the health care disparities of underserved medical populations. In the past few years there have been a number of patient navigation studies (Battaglia, Roloff, Posner, & Freund, 2007; Dignan, Burhansstipanov, Hariton Harjo, Rattler, & Lee 2005; Ferrante, Chen, & Kim, 2008; Giese Davis, Bliss Isberg, Carson, Star, Donaghy, Cordova, et al., 2006; Psooy, Schreuer, Borgaonkar, & Caines, 2004). Some programs have combined patient navigation with community outreach progr ams (Gabram et al., 2008), health education (Fang et al., 2008; Oluwole, Ali, Adu, Blane, Barlow, Oropeza, et al., 2003), and psychosocial counseling (Ell et al., 2002; Ell et al., 2007). The National Cancer Institute is currently funding a multisite patie nt navigation research program (PNRP), which aims to reduce delays in access to cancer care among low socio economic status and racial and ethnic minority populations who have been diagnosed with or have had an abnormal screening for breast, cervical, col orectal, or prostate cancer (Freund et al., 2008).

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7 A review done by Wells and colleagues in 2008 evaluating the efficacy of various patient navigation programs found that these interventions lead to a number of positive outcomes including; a higher likeli hood of timely follow up to referral and diagnostic resolution (Battaglia et al., 2007; Ferrante et al., 2008), increased adherence to mammogram screening guidelines (Dignan et al., 2005); decreased levels of patient anxiety as compared to patients who rec eived usual care (Ferrante et al., 2008); decreased trauma symptoms, decreased wish for breast cancer resources, and increased emotional well being and self efficacy (Giese Davis et al., 2006). Although evidence suggests that psychosocial interventions wou ld increase adherence and improve health care treatment in underserved populations, there is a paucity of research on psychosocial interventions in this area. As discussed above, the majority of these interventions focused on the use of navigators and/or h ealth education program to overcome logistical obstacles to care. Although these programs have beneficial outcomes, they fail to address the full breadth of difficulties faced by these women. There are a few studies, however, which have incorporated psycho social counseling into cancer screening (Ell et al., 2002; Ell et al., 2007). Ell and colleagues found that implementing mental health screening and subsequent psycho educational counseling, navigation, and referral to community resources reduced psycholog ical, educational, logistical, and health systems barriers to health care adherence in underserved women (2002). Additionally, in a randomized controlled study, Ell found that women who had gone through a combined patient navigation and psychosocial counse ling intervention were more likely to be adherent through diagnostic resolution

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8 (90% vs. 66%) and have a more timely diagnosis (77% vs. 46%) as compared to women who received usual care (2007). These multi disciplinary interventions addressing psychosocial and logistical needs of underserved women have promising results and therefore need to be further explored. Definition and role of patient navigator The role of the patient navigator encompasses a large array of responsibilities and there is a lack of co nsensus on the definition of and qualifications for patient navigators (Dohan & Schrang, 2005; Freund et al., 2008; Wells et al., 2008). In 2008, Freund and abnormal can cer screening or a new cancer diagnosis in accessing the cancer care system; overcoming health system barriers, Wells expanded the description of the navigator responsibi lities to include providing health care information, addressing patient barriers to care, and providing psychosocial support (2008). These responsibilities can be accomplished by the navigator via following actions: coordinating care from multiple provider s (Dohan & Schrang, 2005; Freund et al., 2008; Gabram et al., 2008; Wells et al., 2008), assisting patients with medical paper work (Wells et al., 2008), scheduling and attending appointments (Freund et al., 2008; Wells et al., 2008), providing health educ ation (Dohan & Schrang, 2005; Freund et al., 2008; Gabram et al., 2008;Wells et al., 2008), addressing psychosocial issues by referring to a counselor or cancer support group (Wells et al., 2008), arranging forms of financial support (Freund et al., 2008), arranging for childcare and transportation during appointments (Freund et al., 2008), and scheduling appointments with culturally sensitive health care professionals (Freund et al.,

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9 2008). Navigators also provide psychosocial support (Dohan & Schrang, 200 5; Freund et al., 2008; Gabram et al., 2008). Due to the myriad of responsibilities undertaken by patient navigators, a division of these responsibilities between professionals such as a psychosocial counselor would result in more comprehensive, higher qua lity care. Definition and role of psychosocial counselor The few studies which included a psychosocial counselor limited the counselor to providing emotional support. The counselor addressed some of the common barriers by providing brief interactive psych oeduational counseling and referrals to community resources (Ell et al., 2002; Ell et al., 2007). Since addressing the psychosocial obstacles is an important aspect of quality cancer care for underserved women going through breast cancer treatment, elucida tion of the actions taken by a counselor to overcome the many barriers they encounter to increase adherence to treatment is necessary Contributions to the literature This study examined The Breast CARES (Cancer Advocacy, Resources Education and Support) in tervention, which combined patient navigation with telephone counseling to guide newly diagnosed, underserved breast cancer patients in overcoming treatment barriers. Research has shown that these barriers may impact the timeliness and the quality of their cancer care. The goals of the proposed secondary analysis of data gathered in this intervention were twofold: 1) To identify common barriers encountered by these women with a focus on understanding how the patient navigator and telephone counselor address ed these concerns; 2) To understand the relationship between patient reported barriers and patient reported psychosocial distress, depression, and quality of

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10 life. In order to achieve these goals, two specific aims and three research questions guided the a nalysis. Aim 1 : Understanding the roles of the navigator and counselor in the CARES intervention in decreasing psychosocial, logistical, communication, and medical barriers encountered by underserved breast cancer patients during the course of their cancer treatment. Research Question 1: What are the most common types of barriers encountered by underserved patients undergoing breast cancer treatment? Research Question 2: How do the patient navigator and the telephone counselor assist the patient in overcomi ng the barriers? What were the similarities and difference in their respective roles? Aim 2: Understanding the relationship between patient demographics, patient reported barriers and patient reported cancer related psychosocial variables. Research Questi on 3: What is the association between number of barriers reported and patient medical variables (stage of cancer), demographics (ethnicity, language, insurance), and patient scores on psychosocial measures of depression, quality of life, social support, an d cancer specific distress? Based on the reviewed literature, we expected that the common obstacles encountered by underserved breast cancer patients participating in the CARES study will include 1) logistical barriers such as lack of transportation, inade quate finances, scheduling issues, child care issues; 2) communication barriers with medical staff; 3) medical barriers such as treatment complications and side effects, comorbid medical

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11 illnesses; and 4) psychosocial barriers such as negative emotional re action to diagnosis, lack of family and social support, comorbid mental illness. Furthermore, consistent with the Health Care Utilization Model (Andersen and Neuman, 1973) which provides a framework for interpretation of health care utilization in the con text of societal and individual determinants and based on the literature, we hypothesize that depression, cancer related distress, stage of cancer, and lack of insurance will be positively correlated with the number of barriers and social support and quali ty of life will be negatively correlated to the number of patient reported barriers.

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12 CHAPTER I I. METHOD Breast Cancer Advocacy, Resources Education and Support Intervention The study was a mixed methods analysis of the Breast CARES interv ention, a feasibility study of a multidisciplinary case management program for medically underserved, low income women with newly diagnosed breast cancer (PI: Raich, NIH R21; CA114477). The goal of CARES was to conduct a pilot study to test the feasibility and acceptability of a program utilizing both counselor initiated telephone calls and on site navigator support to recently diagnosed patients receiving treatment at a local urban The Breast CARES intervention consisted o f up to 9 telephone counseling sessions as well as up to 5 on site and telephone based navigation sessions. The topics covered in the counseling sessions included decisional counseling, preparation and coping with cancer treatment, and transitioning out of primary treatment. The topics covered in the navigation sessions included assistance with logistical matters (transportation, scheduling appointments, etc.), and identifying sources of financial aid and providing informational support. Participants A tot al of 20 women, newly diagnosed with breast cancer were recruited at the local health care system, which serves an increasingly diverse and uninsured population. (PI: Raich, NIH R21; CA114477). Eligibility criteria included 1) a recent diagnosis of breast

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13 3) conversant in either English or Spanish, 4) ability to read and sign informed consent in either English or Spanish. Subjects who met the eligibility criteria were approached during their clinic visit about their interest in study participation by the clinical nurse assisting with recruitment to this study. Those women who were interested in participating were then consented by the CRA. A separate consent for allowi ng access to protected medical information was obtained from each consenting subject to meet HIPAA requirements. The consent process met all of the specifications outlined by Colorado Multiple Institute Review Board. No monetary incentive was provided for participation in this study. Procedures Data was collected in three modalities: 1) baseline and post intervention telephone interviews, 2) patient navigator initial needs assessment, and 3) patient navigator and counselor session notes. Baseline and post intervention telephone interviews. T elephone interviews were conducted at baseline (prior to beginning cancer treatment) and at one month following completion of the intervention (end of primary treatment by highly trained telephone interviewers who work in AMC Cancer Research Assisted Telephone Interviewing (CATI) Unit. Patient reported social support, depression, cancer specific distress, and quality of life were evaluated. Social support was measured using the Interpersonal Suppor t Evaluation List 12 (Cohen, Mermelstein, Karmack & Hoberman, 1985). Based on perceived availability 12 is a well validated measure of perceived social support

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14 which has demonstrated high internal consistency (alpha = .90) and is stable over time ( r =.70) (Brookings & Bolton, 1988). ISEL 12 reliability within our sample was strong (alpha= .90) Depression was evaluated using The Cente r for Epidemiologic Studies Depression Scale (CES D), a 20 item self report scale designed to assess depression in the general population (Radloff, 1977). Participants were asked to rate a series of statements on a depressive symptoms they had experienced within the last week. Scores equal to or greater than 16 are indicative of clinical levels of psychosocial distress. The CES D demonstrates high levels of internal consis tency (alpha=.90) and a test retest reliability of .45 to .70 across time (Radloff, 1977). The CES D scale demonstrated high reliability within our sample (alpha=.89). The Impact of Events Scale (IES) was used to measure cancer specific distress. The IES i s a 15 item self report scale designed to evaluate avoidance and intrusion, two major psychological responses to stressful life events (Horowitz, 1979). Based on experiencing avoidance and intrusion of specified thoughts during the past 7 days, participant calculated for Intrusion (7 items; alpha = .78) and Avoidance (8 items; alpha = .82). Split half reliability of the total scale is .86 (Horowitz, 1979 ). Within our sample the I ES demonstrated high reliability (alpha=.88). Quality of life was measures using The Functional Assessment of Cancer Therapy for Breast Cancer (FACT B), which is a 44 item self report measure designed to measure multidimensional quality of life in patients with breast cancer (Cella, 1993). Participants

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15 were asked to rate experiences about physical well being, social/family well being, emotional well being, functional well being, and additional concerns on a scale from 0 e total FACT B score has high internal consistency (alpha=.90) and high subscale reliability (alpha=.63 to .86) (Brady et al, 1997). Charleston Comorbidity Index, a methodology which assigns a numerical value to comorbid illnesses, often used to assess th reat of death through treatment, was used to quantify the risk of mortality given the presence of various comorbid conditions within our population (Charlston, et al., 1987). Additionally, process evaluation questions, consisting of a combination of fixed response and open ended questions, were used to assess participant satisfaction at the end of primary treatment. They included 1) Likert type questions assessing the perceived need for the Breast CARES program, with separate questions for the on site navi gator component and the off site telephone counseling component of the program; 2) Questions evaluating the perceived satisfaction with the on site navigator program and the off site telephone counseling component, with follow up open ended questions to pr ovide examples for these ratings. Patient navigator initial needs assessment. The navigator set the baseline interview appointment on the day of diagnosis and sent the participant home with an appointment card reminder and paper copy of the intervie w. The baseline interviews were scheduled for completion within one week of diagnosis. Participants reported their gender, age, ethnicity, occupation, language spoken, employment status, and whether or not they were insured at the baseline interview. The n avigator also inquired about a 10 potential barriers the patient might be concerned about

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16 at baseline. These included worries about housing, insurance, work, transportation, child care, finances, obtaining prescriptions, obtaining food, getting along with friends and family, getting along with the medical staff, having adequate social support and having adequate education. Number of patient reported barriers was based on the number of barriers endorsed in the initial needs session. All data from the baselin e interviews was kept in a password protected database. Navigator and counselor case notes. Additionally, separate case notes about topics covered in each session were kept by the navigator and the counselor throughout the intervention which were st ored in a password protected Microsoft Access database. Data Analysis Qualitative data that was collected in the navigator sessions and the telephone counselor sessions was analyzed using qualitative ethnographic content analysis. The quantitative data c ollected by the CATI interviewers was analyzed using correlational analysis. Qualitative analysis. Separate case notes completed by the patient navigator and the telephone counselor were analyzed using ethnographic content analysis. Using the methods purported by Creswell, analysis was done by the primary qualitative analyst reading through the case notes to identify common topics (1998). Barriers that were brought up in the patient navigator and telephone counselor case notes as well as how these bar riers were addressed were categorized into their codes and appropriate themes were deduced based on the research questions. The thematic coding structure was informed by the

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17 aforementioned research questions as well as categories of barriers in the extant literature. Quantitative analysis. Continuous demographic and medical variables will be described using mean and standard deviation and dichotomous demographic and medical variables will be described using frequencies. Due to the small sample size normality of data was tested by calculating skewness and kurtosis, and an alpha level of 0.01 with an absolute value of + 2.58 was used to determine significant levels of skewness and kurtosis instead of an absolute value of + 1.96, which would generally be used with a larger sample (Field, 2005). Person correlations were then conducted between continuous variables (patient scores on psychosocial measures, stage of cancer, and age) and number of patient reported barriers. Point biserial correlations were cond ucted between dichotomous demographic variables (insurance, language, ethnicity, and employment status) and number of patient reported barriers. For the point biserial correlations the categories of nt status was collapsed into two groups retired and unemployed in group 1 and employed in group 2. Regarding ethnicity, white and non white categories were created and coded as 0 and 1 respectively.

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18 CHAPTER III RESULTS Participants The final sample inc luded 20 women with a mean age 54.2 ( SD =12.5). With regards to employment 55% of participants were unemployed and 25% were retired. Furthermore 55% of our sample were uninsured, 85% were in the early stages of cancer (I and II), and 80% spoke primarily Eng average of 45 contacts (in person or by phone), an average of 4 (out of 5 possible) navigation sessions and an average of 5 (out of 9 possible) telephone counselor sessions. Information regarding their demogra phic characteristics as well as amount of participation in the intervention, organized based on ethnicity, can be seen in Table III. 1. Furthermore, how these 20 women varied in terms of stage of cancer based on their ethnicity is illustrated by Figure III. 1. Table III. 1 Sample characteristics of Breast CARES participants (n=20) Caucasian N (%) African American N (%) Hispanic N (%) Native American N (%) Total N (%) Employment Employed 0 (0%) 0 (0%) 4 (20%) 0 (0%) 4 (20%) Unemployed 3 (15%) 3 (15 %) 5 (25%) 0 (0%) 11(55%) Retired 4 (20%) 0 (0%) 0 (0%) 1 (5%) 5 (25%) Insurance Insured 5 (25%) 1 (5%) 2 (10%) 1 (5%) 9 (45%) Uninsured 2 (10%) 2 (10%) 7 (35%) 0 (0%) 11 (55%) Stage of Cancer I 6 (30%) 1 (5%) 5 (25%) 1 (5%) 13 (65%) II 1 (5%) 2 (10%) 1 (5%) 0 (0%) 4 (20%) III 0 (0%) 0 (0%) 3 (15%) 0 (0%) 3 (15%) Primary Language English 7 (35%) 3 (15%) 5 (25%) 1 (5%) 16 (80%) Spanish 0 (0%) 0 (0%) 4 (20%) 0 (0%) 4 (20%)

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19 #of PN contacts M =22.86 SD =19.36 M =95 SD =89.23 M =49.89 SD =30.99 M =6 M =45 SD =45.03 # of PN sessions M =3.57 SD =1.40 M =4.67 SD =0.58 M =4.22 SD =1.30 M =3 M =4.0 SD =1.08 #of TC sessions M =5.71 SD =2.43 M =5.33 SD =1.53 M =4.22 SD =2.44 M =4.0 M =4.95 SD =2.24 Due to the fact that there was only 1 Native American in our sample, a SD could not be calculated. Fi gure III. 1 Stage of cancer among various ethnicities included in the Breast CARES intervention Qualitative Analysis Thematic analysis of the navigator and counselor case notes reveale d four salient themes of barriers. The four themes of barriers encountered by these women included logistical, communication, medical and psychosocial. Additionally, analysis revealed many similarities and differences in terms of actions taken by the patie nt navigator and the telephone counselor to overcome the respective barriers. These actions could be categorized into the following themes: Direct actions taken on behalf of the patient (i.e. attending appointments with patients or providing emotional supp ort), indirect actions taken on behalf of the patient ( i.e. coordinating care with other professionals or community organizations), and skills training (i.e. teaching patients effective coping,

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20 communication, and organization techniques). The specific the mes of barriers as well as the actions taken to overcome the various barriers are discussed below. The examples included in the paper were selected as they are clear illust rations of a particular theme. Logistical. Analysis revealed a myriad of logistica l barriers encountered by these women, thus logistical barriers comprises the first theme of barriers. Examples include difficulty finding transportation to medical appointments, inadequate finances to pay for medical and household bills, difficulty obtain lack of sufficient insurance coverage. Logistical barriers were primarily addressed by the patient navigator. The patient navigator coordinated overcoming these barriers by helping the patient directly, or by coordinating care with a professional, community member, or to complete financial assistance forms would be a direct action and an example of an indirect action taken on behalf of the patient by the navigator consisted of coordinating helped to ensure as many resources as possible for the care of these patients. The metho ds employed by the patient navigators can be seen in the below examples from various felt bad and I offered to go to her house in the afternoon a nd pick up the bills daughters but needs help now. [PN] to look for food banks and other

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21 Communication. Communication barriers emerged as the second theme, or common issue faced by these women. Such barriers included difficulty scheduling appoint ments, difficulty communicating with physician about treatment side effects, and language barriers. Communication issues were addressed by both the patient navigator as well as the telephone counselor. In general, the patient navigator addressed these barr iers employing both direct and indirect actions on behalf of the patient. Indirect actions on behalf of the patient involved communicating with other health care professionals to assist with coordinating care and scheduling appointments. Additionally, the patient navigator spoke with members of the community on behalf of the patient. On the other hand direct actions implemented by the patient navigator to overcome language barriers, included attending appointments with the patients and translating if necess ary. These actions on behalf of the patient ensured timely scheduling of follow up appointments and increased continuity of quality care. The telephone cou nselor addressed communication barriers by teaching the patients adaptive communication skills. Such skills included clearly stating what one needs in order to increase effectiveness when talking with their health care providers to get any medical concerns addressed in a more timely manner. The skills also were aimed to

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22 when she is overwhelmed by others and nee about identifying what would be helpful to her and ways to consistently communicate that to others using 'I' statements rather than waiting for things to reach a Medical. Analysis also revealed many medical barriers encountered by these women. Medical barriers included making difficult treatment decisions, managing treatment side effects, and managing complex medication and appointment schedules These barriers were facilitated by both the patient navigator as well as the telephone counselor. Regarding the treatment decisions, both the patient navigator and the telephone counselor provided a direct outlet for the patients to discuss aspects of va rious treatments. Both parties also provided additional information for the patient regarding experience of side effects and information about relevant community resources. t o give patient a chance to think about it. Patient cried and said to me [PN] she felt sad about the prospect of losing her breasts but she also said that she knew this would be the recommendation given her genetic profile. about her odds and how even a small percentage However, the telephone counselor employed additional direct support to the patient in the for treatment decisions and expected outcomes to decrease decisional regret or distress and feel more confident about the chosen treatment procedures. This attitude reframing help

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23 mastectomies and keeps reminding herself of her making decisions to live and have a chance to spend more time with her family. Husband of 8 years is very supportive in general and of her decision. Did not react to seeing her chest when Another important way the telephone counselor addressed medical barriers was by helping patient de velop organizational systems to remind the patient about medication and appointments. This skills training helped overcome medical adherence issues. calendar to track all appointm ents which will decrease confusion and allow her to visualize free time that she can spend in self care (getting out of the house, seeing grandsons play football, etc.) 2) Write out proper use of medications and organize medications in a med planner Psyc hosocial. The fourth theme of barriers revealed by the analysis encompassed psychosocial barriers such as negative emotional reaction and poor emotional adjustment to illness. The emotional reactions to illness and treatment reported by these women which included fear, anxiety, embarrassment, anger, frustration, denial, and depression, could lead to avoidance of treatment negatively impacting treatment outcomes. Another important psychosocial barrier that emerged in the case notes was insufficient social s upport. undergo chemo therapy. Her hair is very important Psychosocial barriers were addressed by the patient navigator and the telephone counselor through direct actions as well as skills training; however the mechanism in

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24 which they were addressed differed, reflecting the different training of the two professionals. As seen in the excerpts below, the patient navigator mainly took direct actions such as providing emotional support and referral resources. fearful. [PN] gave emotional support M ental Health Center of Denver, Cancer Information and Counseling Line, and Cancer Information While the telephone counselor also provided emotional support, development and utilization of adaptive coping behaviors skills and organizational skill s were techniques emotions and overcome barriers. techniques such as massage, deep breathing and m uscle tension and relaxation. Additionally, the telephone counselor aided with identification of sources of social support and education about situations where different types of support would be more helpful than others. The telephone counselor also connected the women who expressed interest to breast cancer support groups. Development of strong social support systems assisted in overcoming emotional barriers by providing an additional s ource of emotional of anxiety and distress. Also by being connected to support groups women can be d perhaps see the journey in a less overwhelming light.

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25 and is very interested in joining one or more support groups I [TC] gave information about Quantitative Analysis During the initial patient navigator needs assessment, there were 10 possible barriers that could be reported. The averag e number reported assessment was 2.6 ( SD = 2.35). Additionally the respective baseline scores of the 20 women on the psychosocial measures are displayed in Table III. 2. Notably the mean score on the CES D was above the clinical significance cut off of 18, indicating that on average these women were clinically depressed during the pre treatment phase. Table III.2 Scores on psychosocial measures at baseline N Mean SD Range Depression (CES D) 19 22.94 15.19 0 51 Cancer Specific Distress (IES) 20 37.87 1 1.50 17 57 Social Support (ISEL) 19 33.26 11.05 15 48 Quality of Life (FACTB) 15 100.60 17.93 58 135 Barriers Reported 20 2.6 2.35 0 8 Correlational analysis revealed no significant associations between number of barriers reported and patient medical variables (stage of cancer, comorbid medical illness), demographics (age, ethnicity, language, insurance), or patient scores on psychosocial measures of quality of life or cancer specific distress. However, depression was positively associated with number of barriers ( r =.617, p<.05) and social support was negatively related to number of barriers ( r = .46, p=.05). These Pearson Correlation coefficients and point biserial correlation coefficients are displayed in Table III.3 and Table III.4, respectively.

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26 Table III.3 Relationship between continuous variables and patient reported barriers N Pearson Correlation Coefficient Significance Depression (CES D) 19 .62* .01 Cancer Specific Distress (IES) 19 .21 .45 Social Support (ISEL) 19 .46* .05 Quality o f Life (FACTB) 15 .30 .28 Comorbidity Index 15 .25 .38 Stage of Cancer 20 .18 .46 Age 20 .31 .18 Table III.4 Relationships between dichotomous variables and patient reported barriers N Point Biserial Correlation Coefficient Significance Insurance 20 .19 .41 Employment 20 .08 .75 Language 20 .32 .17 Ethnicity 20 .30 .19

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27 C HAPTER IV DISCUSSION Summary of Findings A wide array of barriers impact the quality of cancer care for underserved and ethnic minority patients. Based on th e analysis, four themes of barriers: logistical, communication, medical, and psychosocial, were encountered by these women. These themes of barriers are reflective of the common barriers described in the literature (Allen, et al., 2008; Borrayo, 2007; Doha n & Schrang, 2005; Davis et al., 2009; Ell et al. 2007; Freund et al., 2008; Galvan et al., 2009; Wells et al., 2008). Consistent with the literature, we found the patient navigators typically addressed logistical and communication barriers as well as pro vided referrals for community services and emotional support for psychosocial barriers (Dohan & Schrang, 2005; Freund et al., 2008; Gabram et al., 2008; Wells et al., 2008). Moreover, navigators in our intervention provided translation services for some of the patients and health care this speaks to the institutional need for translators and could represent an additional area of training or qualification consideratio n for patient navigators. In addition, this study contributed to defining the role of a psychosocial telephone counselor in overcoming barriers in the context of a navigation program. This role consisted of providing emotional support for the women as well as providing skills training, with an emphasis on communication, organization, adaptive coping behaviors, and identification of sources of social support. These skills in turn empowered the patients to be more active participants in their health care expe rience. As supported by

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28 the literature, negative emotional reactions to cancer diagnosis and treatment as well as inadequate social support can negatively impact treatment outcomes and thus are conceptualized as barriers to care (Allen et al., 2008; Ell et al., 2007; Freund et al., 2008; Galvan et al., 2009). Use of psychosocial skills training to overcome negative emotional reactions to treatment such as fear, anxiety, and depression will likely increase the timeliness of treatment and adherence to follow up recommendations (Davis et al., 2009; psychosocial counselor in terms of more clearly defining specific types of psychoeducational skills taught by the counselor to help these women overcome psychosocial barriers to care. Our findings demonstrate the unique and complementary roles for patient navigators and counselors in addressing the many barriers faced by underserved breast cancer patients. Regarding the differences in their roles, patient navigators tended to address barriers by taking certain types of direct actions such as meeting with the patient to complete forms and indirect actions such as coordination with other professionals on behalf of the patient, while the telephone counselor mainly provided skills training. However, both health care professionals provided direct emotional support. Although our hypotheses were not met regarding the relationship of barriers to psychosocial variables (cancer related distress, quality of life), demographic variables (insurance status, ethnicity, age, language spoken) and stage of cancer, the significant relationship between the number of patient reported barriers and depression represents a noteworthy finding. Given the high lev el of psychological comorbidities in underserved populations (Ell et al., 2002; Ell et al., 2005; Ell et al., 2007) and the link between

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29 psychosocial comorbidities and increased cancer mortality (Spiegel & Geise Davis, 2003) these findings are indicative t hat interventions focused on overcoming barriers to care for these populations are especially important. Although we cannot infer causality based on our findings, the strong association between depression and number of patient reported barriers speaks to t he fact that psychosocial interventions in this population are necessary to bridge the gap between health disparities in this population. As suggested by the Institute of Medicine report in 2007, oncology treatment teams must broaden their focus to include psychosocial interventions. Also the negative relationship between social support and number of patient reported barriers is another important finding. Women who have social support report better adjustment to breast cancer (Parker, Baile, De Moor & Cohen 2003). Thus interventions aimed at identifying social support sources (e.g. family or support groups) and connecting patients to these sources can be extremely beneficial to increase quality of life in underserved women going through breast cancer treatm ent. Our findings indicate that patient navigators and telephone counselors addressed problems differently based on their respective professional training and the patient likely benefited from these different approaches. The patient navigators and the tel ephone counselors also worked in conjunction, referring patients to one another based on the get the most comprehensive care possible. Understanding the importance of the patient improving healthcare outcomes in underserved cancer populations

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30 Limitations The lack of significant relationships between the number of barriers and the psychosocial and demographic variables could be due to the relatively small sample of 20 women. Also there was not a lot of variability in the patient reported barriers, which may have impacted our findings. Another consideration when interpreting these results is the method in which the barriers were reported and conceptualized by the patient navigator and counselor. This could result in some bias regarding how the barriers and their subsequent resolution were reported. Finally, there was no set measure used to quantitatively assess number of barriers, rather a preconceived set of questions. Arguably, this would not leave patients room to report barriers other than those asked in the initial needs assessment. Despite these aforementioned limitations, our analysis evaluated a rich data set with data collected by multiple sources in various modalities, resulting in a Future Research Future studies should examine the relative importance of the pati ent navigator and telephone counselor in decreasing barriers and empowering patients to utilize adaptive coping skills. One important question that should be considered is whether the telephone counselor addressed the psychological issues and comorbidities more than the patient navigator. If so, can we tailor training of navigators to address such comorbidities or is it necessary to include psychosocial counseling as a standard of care for these individuals going through cancer treatment. For example, navig ators could be trained to recognize certain psychosocial comorbidities or issues and refer to a counselor or psychologist designated within the health care setting to work with these women.

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31 Finally, when assessing barriers to health care utilization one mu st consider individual characteristics, provider characteristics, as well as institutional characteristics, and the barriers that may arise in any of those contexts. This study mainly focused on personal and some institutional characteristics, however when exploring implementation of navigation interventions, future research could broaden the scope to address practitioner barriers or a combination thereof.

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32 REFERENCES Allen, J.D., Shelton, R. C., Harden, E., & Goldman, R.E. (2008). Follow u p of abnormal screening mammograms among low income women: Findings from a qualitative study. Patient Education and Counseling, 72 283 292. Andersen, R.A. & Newman, J.F. (1973). Societal and individual determinants of medical care utilization in the Uni ted States. Health and Society, 51 (1), 95 124. American Cancer Society (2009). Breast Cancer Facts &Figures 2009 2010 Atlanta, GA: American Cancer Society. American Cancer Society. Cancer Prevention & Early Detection Facts & Figures 2009. Atlanta, GA: American Cancer Society; 2009. Battalia, T.A., Roloff, K., Posner, M.A.. & Freund, K.M. (2007). Improving follow up to abnormal breast cancer screening in an urban population; a patient navigation intervention. Cancer, 109 359 367. Borrayo, E.A. (2007) Using a community readiness model to help overcome breast cancer disparities among U.S. Latinas. Substance Use and Misuse, 42 603 619. Brookings, J.B. & Bolton, B. (1988). Confirmatory factor analysis of the interpersonal support evaluation list. America n Journal of Community Psychology, 16 (1), 137 147. Brady, M.J., Cella, D.F., Mo, F., Bonomi, A. E., Tulsky, D.S., Deasy, S. et al. (1997). Reliability and validity of the Functional Assessment of Cancer Therapy Breast quality of life instrument. Journal o f Clinical Oncology, 15 974 986. Bigby J. & Holms M.D. (2005). Disparities across the breast cancer continuum. Cancer Causes Control, 16 35 44. Cella, D.F., Yellen S.B. (1993). Cancer Support Groups: The State of the Art. Cancer Practice ,1, 56 61. C harlson M.E, Pompei P, Ales KL, MacKenzie CR (1987). A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. Journal of Chronic Disorders, 40 (5), 373 383. Cohen, S. & Hoberman, H. (1983). Positive events and social supports as buffers of life change stress. Journal of Applied Social Psychology, 13 99 125 Cohen S, Mermelstein R, Kamarck T, and Hoberman H. (1985). Measuring The Functional Components Of Social Support. In I. G. Sarason and B. R. Sarason (Ed s.), Social Support: Theory, Research And Application. The Hague, Holland: Martinus Nijhoff.

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33 Creswell, J.W. (1998). Qualitative Inquiry and Research Design Choosing Among Five Traditions. Thousand Oaks, CA: Sage Publications. Davis, C. Darby, K., Likes, W., & Bell, J. (2009). Social workers as patient navigators for breast cancer survivors: What do African American medically underserved women think of this idea? Social Work in Health Care, 48 (6), 561 578. DeNavas Walt, C., Bernadette, D.P., & Smith, J. (2007). US Census Bureau Current Coverage Population Report, P60 233 on Income, Poverty, and Health Insurance Coverage in the United States: 2006. Washington, D.C: US Census Bureau. Dignan, M.B., Burhansstipanov, L., Hariton, J., Harjo, L., Rattler, T., Lee, R., et al. (2005). A comparison of two Native American navigator formats: face to face and telephone. Cancer Control, 12, 28 33. Donan D. & Schrang D. (2005). Using navigators to improve the care of underserved patients. Cancer, 104, 848 855. Ell, K., Vourlekis, B., Lee, P.J., & Xie B. (2007). Patient navigation and case management following an abnormal mammogram: A randomized clinical trial. Preventive Medicine, 44 26 33. Ell, K., Sanchez, K, Vourlekis, B., Lee P.J., Dwight Johnson, M., Lagomasin o, I., et al. (2005). Depression, correlates of depression, and receipt of depression care among low income women with breast or gynecological cancer. Journal of Clinical Oncology, 23 (13), 3052 3060. Ell, K., Vourlekis, B., Nissly, J., Padgett, D., Pineda D., Sarabia, O., et al. (2002). Integrating mental health screening and abnormal cancer screening follow up: An intervention to reach low income women. Community Mental Health Journal, 38 (4) 311 325. Fang, C. Y., Ma, G. X., Tan, Y., & Chi, Nungja. (2007 ). A multifaceted intervention to increase cervical cancer screening among underserved Korean women. Cancer Epidemiology, Biomarkers, & Prevention, 16 (6), 1298 1302. Field, A. (2005). Discovering Statistics Using SPSS (2 nd ed.). London: Sage Publications. Ferrante, J.M., Chen, P.H., & Kim, S. (2008). The effect of patient navigation on time to diagnosis, anxiety, and satisfaction in urban minority women with abnormal mammograms: a randomized controlled trial. Journal of Urban Health, 85 114 124. Freund K.M., Battaglia, T. A., Calhoun, E., Dudley, D. J., Fiscella, K., Paskett, E. et al. (2008). National cancer institute patient navigation research program. Cancer, 113 (12), 3391 3399.

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34 Galvan, N., Biki, L.P., & Garces, D. M. (2009). Suddenly, a carriage appears: Social support needs of Latina breast cancer survivors. Journal of Psychosocial Oncology, 27 361 382. Giese Davis, J., Bliss Isberg, C., Carson, K., Star, P., Donaghy, J., Cordova, M.J., et al. (2006). The effect of peer counseling on quality o f life following diagnosis of breast cancer; an observational study. Psycho oncology, 15 1014 1022. Grahram, S.G., Lund M. J., Gardner, J., Hatchett, N., Bumpers, H. L., Okoli, J., et al. (2008). Effects of an outreach and internal navigation program on breast cancer diagnosis in an urban cancer center with a large African American population. Cancer, 113 (3), 602 607. Hegel, M.T., Moore, C.P., Collins, E.D., Kearing, S., Gillock, S., K.L. Riggs, R. L. (2006). Distress, psychiatric syndromes, and impairm ent in function in women with newly diagnosed breast cancer. Cancer, 107 (12), 2924 2931. Hughes, C., Lerman, C., & Lusterbader, E. (1996). Ethnic differences in risk perception among women at increased risk for breast cancer. Breast Cancer Research and T reatment, 40 25 35. Horowitz M., Wilner N, Valverde W. (1979). Impact Of Event Scale: A Measure Of Subjective Stress. Psychosomatic Medicine, 41 (3), 209 218. Institute of Medicine. (2002). Speaking of Health: Assessing Health Communication Strategie s for Diverse Populations. National Academies Press; Washington, DC. Miller, B.A., Hankey, B.F., Thomas, T.L (2002). Impact of sociodemographic factors, hormone receptor status, and tumor grade on ethnic differences in tumor stage and size for breast canc er in US women. American Journal of Epidemiology, 155 (6), 534 545. Oluwole, S.F., Ali, A.O., Adu, A., Blane, B.P., Barolw, B., Oropeza, R., et al. (2003) Impact of a cancer screening program on breast cancer stage at diagnosis in a medically underserved u rban community. Journal of the American College of Surgeons, 196 180 188. Parker, P.A., Balie, W.F., De Morr, C. & Cohen, L. (2003). Psychosocial and demographic predictors of quality of life in a large sample of cancer patients. Psycho Oncology, 12 18 3 193. Psooy, B.J., Schreuer, D., Borgaonkar, J., & Caines, J.S. (2004). Patient navigation: Improving timeliness in the diagnosis of breast abnormalities. Cancer Association of Radiology Journal, 55 145 150.

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35 Radloff L. (1977). The CES D Scale: A Self Report Depression Scale for Research In The General Population. Applied Psychological Measurement ; 1 385 401. Speigel, D. & Giese Davis, J. (2003). Depression and Cancer: Mechanisms and Disease Progression. Society of Biological Psychiatry, 54 269 282 Vitek, L., Rosenzweig, M.Q., & Stollings, S. (2007). Distress in patients with cancer: Definitions, assessment, and suggested interventions. Clinical Journal of Oncology Nursing, 11 (3), 413 418. Wells, K.J., Battaglia T. A., Dudley, D.J., Garcia, R., Greene, A., & Calhoun, E. (2008). Patient Navigation: State of the art of is it science? Cancer, 113 (8), 1999 2010.

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36 APPENDIX Quantitiave Psychosocial Measures Interpersonal Support Evaluation List 1. If I wanted to go on a trip for a day (for example, to the country or mountains), I would have a hard time finding someone to go with me. 1. definitely false 2. probably false 3. probably true 4. definitely true 2. I feel that there is no one I can share my most private worries and fears with. 1. definitely false 2. probably false 3. probably true 4. definitely true 3. If I were sick, I could easily find someone to help me with my daily chores. 1. definitely false 2. probably false 3. probably true 4. definitely true 4. There is so meone I can turn to for advice about handling problems with my family. 1. definitely false 2. probably false 3. probably true 4. definitely true 5. If I decide one afternoon that I would like to go to a movie that evening, I could easily find someone t o go with me. 1. definitely false 2. probably false 3. probably true 4. definitely true 6. When I need suggestions on how to deal with a personal problem, I know someone I can turn to. 1. definitely false 2. probably false 3. probably true 4. defini tely true 7. I don't often get invited to do things with others. 1. definitely false 2. probably false 3. probably true 4. definitely true 8. If I had to go out of town for a few weeks, it would be difficult to find someone who would look after my hou se or apartment (the plants, pets, garden, etc.). 1. definitely false 2. probably false 3. probably true 4. definitely true

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37 9. If I wanted to have lunch with someone, I could easily find someone to join me. 1. definitely false 2. probably false 3. p robably true 4. definitely true 10. If I was stranded 10 miles from home, there is someone I could call who could come and get me. 1. definitely false 2. probably false 3. probably true 4. definitely true 11. If a family crisis arose, it would be diff icult to find someone who could give me good advice about how to handle it. 1. definitely false 2. probably false 3. probably true 4. definitely true 12. If I needed some help in moving to a new house or apartment, I would have a hard time finding some one to help me. 1. definitely false 2. probably false 3. probably true 4. definitely true CENTER FOR EPIDEMIOLOGIC STUDIES DEPRESSION SCALE Rarely or none of the time (less than 1 day) Some or a little of the time (1 2 days) Occasionally or a moderat e amount of the time (3 4 days) Most or all of the time (5 7 days) During the past week: 0 1 2 3 1) I was bothered by things 0 1 2 3 2) I did not feel like eating; my appetite was poor 0 1 2 3 3) I felt that I could not sha ke off the blues even with help from my family and friends 0 1 2 3 4) I felt that I was just as good as other people 0 1 2 3 5) I had trouble keeping my mind on what I was doing 0 1 2 3 6) I felt depressed 0 1 2 3 7) I felt that everything I did was an effort 0 1 2 3

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38 8) I felt hopeful about the future 0 1 2 3 9) I thought my life had been a failure 0 1 2 3 10) I felt fearful 0 1 2 3 11) My sleep was restless 0 1 2 3 12) I was happy 0 1 2 3 13) I talked less than usual 0 1 2 3 14) I felt lonely 0 1 2 3 15) People were unfriendly 0 1 2 3 16) I enjoyed life 0 1 2 3 17) I had crying spells 0 1 2 3 18) I felt sad 0 1 2 3 19) I felt that people disliked me 0 1 2 3 0 1 2 3 Impact of Events Scale Below is a list of com ments made by people after stressful life events. Please mark each item, indicating how frequently these comments were true for you during the past seven days. If they did not occur during that time, please mark the "not at all" column. Select only one a nswer per row. Not at all Rarely Sometimes Often 1. I thought about it when I didn't mean to. 0 1 3 5 2. I avoided letting myself get upset when I though about it or was reminded about it. 0 1 3 5 3. I tried to remove it from memory. 0 1 3 5 4. I had trouble falling asleep or staying asleep because of pictures or thoughts about it that came to my mind. 0 1 3 5 5. I had waves of strong feelings about 0 1 3 5

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39 it. 6. I had dreams about it. 0 1 3 5 7. I stayed away from reminders about it. 0 1 3 5 8. I felt as if it hadn't happened or was un real. 0 1 3 5 9. I tried not to talk about it. 0 1 3 5 10. Pictures about it popped into my mind. 0 1 3 5 11. Other things kept making me think about it. 0 1 3 5 12. I was aware that I still had a lot of feelings about it, but I didn't deal with them. 0 1 3 5 13. I tried not to think about it. 0 1 3 5 14. Any reminder brought back feelings about it. 0 1 3 5 15. My feelings about it were kind of numb. 0 1 3 5 The Func tional Assessment of Cancer Therapy for Breast Cancer PHYSICAL WELL BEING I have a lack of energy....................................................... 0 1 2 3 4 I have nausea...................................................................... 0 1 2 3 4 Because of my physical condition, I have trouble meeting the needs of my family......................................... 0 1 2 3 4 I have pain..................................................... ..................... 0 1 2 3 4 I am bothered by side effe cts of treatment......................... 0 1 2 3 4 I feel ill............................................................................... 0 1 2 3 4 I am forced to spend time in bed ....................................... 0 1 2 3 4 SOCIAL/FAMILY WELL B EING I feel close to my friends ................................................... 0 1 2 3 4 I get emotional support from my family............................ 0 1 2 3 4 I get support from my friends ............................................ 0 1 2 3 4 My family has accepted my illness.................................... 0 1 2 3 4 I am satisfied with family communication about my illness ................................................................................. 0 1 2 3 4 I feel close to my partne r (or the person who is my main support) ................................................ ..................... 0 1 2 3 4 I am satisfied with my sex life.......................................... 0 1 2 3 4

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40 EMOTIONAL WELL BEING I feel sad................ ............................................................. 0 1 2 3 4 I am satisfied with how I am coping with my illness ........ 0 1 2 3 4 I am losing hope in the fight against my illness ................ 0 1 2 3 4 I feel nervous ...................... ............................................... 0 1 2 3 4 I worry about dying ........................................................... 0 1 2 3 4 I worry that my condition will get worse........................... 0 1 2 3 4 FUNCTIONAL WELL BEING I am a ble to work (include work at home)......................... 0 1 2 3 4 My work (include work at home) is fulfilling ................... 0 1 2 3 4 I am able to enjoy life ........................................................ 0 1 2 3 4 I have accepted my i llness ................................................. 0 1 2 3 4 I am sleeping well.............................................................. 0 1 2 3 4 I am enjoying the things I usually do for fun..................... 0 1 2 3 4 I am content with the quality of my life right now ............ 0 1 2 3 4 ADDITIONAL CONCERNS I have been short of breath................................................. 0 1 2 3 4 I am self conscious about the way I dress ......................... 0 1 2 3 4 One or both of m y arms are swollen or tender .................. 0 1 2 3 4 I feel sexually attractive..................................................... 0 1 2 3 4 I am bothered by hair loss.................................................. 0 1 2 3 4 I worry that other me mbers of my family might someday get the same illness I have .................................. 0 1 2 3 4 I worry about the effect of stress on my illness ................. 0 1 2 3 4 I am bothered by a change in weight ................................. 0 1 2 3 4 I am able to feel like a woman........................................... 0 1 2 3 4 I have certain parts of my body where I experience significant pain................................................................... 0 1 2 3 4

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41