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Partners of breast cancer survivors: Research participation and understanding of survivors' concerns

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Partners of breast cancer survivors: Research participation and understanding of survivors' concerns

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Content PARTNERS OF BREAST CANCER SURVIVORS:
RESEARCH PARTICIPATION
AND
UNDERSTANDING OF SURVIVORS’ CONCERNS

by

Kysa Marie Christie

A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(PSYCHOLOGY)

December 2011

Copyright 2011 Kysa Marie Christie
ii

Acknowledgments
I would like to thank my dissertation committee members: Drs. Beth Meyerowitz,
Gayla Margolin, Richard John, Maria Aranda, Jack McArdle and Biing-Jiun Shen for
their thoughtful feedback about the design and finalization of the project. As my chair
and graduate mentor, Beth Meyerowitz deserves much additional recognition and thanks.
I would not have successfully completed this degree without her expertise, support, and
commitment to my work and intellectual development. She has challenged me to
improve my thinking, writing and research skills to such a degree, that I finally feel I can
stand with her as a colleague.
My time at USC was also enhanced by the members of the Meyerowitz lab. I am
fortunate to have had Antoinette Giedzinksa, Lara Heflin, Sindy Oh, Lina D’Orazio,
Keiko Kurita, and Megan Taylor-Ford as mentors, colleagues and friends. Finally,
Lauren Ng provided support, encouragement and belief in me throughout this process;
without which my computer and confidence would have shattered.

iii

Table of Contents
Acknowledgments ii
List of Tables iv
List of Figures v
Abstract vi
Preface viii

Chapter One: Characteristics of Breast Cancer Survivors that Predict their
Partners’ Participation in Research
Chapter One Abstract 1
Chapter One Background 2
Chapter One Method 4
Chapter One Results 9
Chapter One Discussion 11

Chapter Two: Association between Partner’s Understanding of Breast Cancer
Survivor’s Fatigue and Fear of Recurrence and Survivor’s
Emotional Adjustment
Chapter Two Abstract 17
Chapter Two Background 18
Chapter Two Method 22
Chapter Two Results 30
Chapter Two Discussion 38

References 45

Appendices
Appendix 1. Consent Form Requesting Permission to Contact Partner 50
Appendix 2. Chapter One Validated Study Measures 51
Appendix 3. Correlations among Survivor Predictors of Consent and
Partner Participation (n=384) 55
Appendix 4. Chapter Two Validated Study Measures 56
Appendix 5. Correlation Matrix for Survivor and Partner Key Variables 60

iv

List of Tables

Table 1: Sample Characteristics for Survivors and Partners 9

Table 2: Backward Stepwise Regression Predicting Consent to Contact
Partner and Partner Participation 11

Table 3: Adjusted Means and Change Over Time for Key Study Variables 29

Table 4: Distribution of Partner Underestimation and Overestimation
of Fear of Recurrence and Fatigue 31

Table 5: Results of Final Regression Equations Predicting T1 Emotional
Adjustment 32

Table 6: Within T2 Regression Equations Predicting Emotional Adjustment 33

Table 7: Over Time Regression Equations Predicting Emotional Adjustment 34

v

List of Figures

Figure 1: Partner Perception of Fatigue Moderates Association between
Survivor Fatigue and Depressive Symptoms at T1 35

Figure 2: Partner Perception of Fatigue Moderates Association between
Survivor Fatigue and Negative Affect at T1 35

Figure 3: Partner Perception of Fatigue Moderates Association between
Survivor Fatigue and Positive Affect at T1 36

vi

Abstract
The majority of studies about adjustment to cancer focus only on the perspectives
of the individual with cancer, and overlook the contributions made by those in the
survivor’s social network. This dissertation examines post-treatment adjustment of breast
cancer survivors and contributions to adjustment from survivors’ male partners. It is
presented as two manuscripts. Both studies derive from the Moving Beyond Cancer
(MBC) intervention study and a second study of the male partners of the MBC
participants.
The first study (Chapter 1) addresses methodological limitations common in
research on couples, namely, low rates of participation, and a lack of understanding about
how representative couples are of the larger population. This study examined
demographic, treatment, relationship and quality of life characteristics associated with
recruitment and retention of partners of breast cancer survivors from the MBC
intervention study. Of 384 partnered survivors who participated in the MBC intervention
study, 280 provided consent for their partners to be contacted, 193 partners completed the
initial study questionnaire, and 164 partners completed both study questionnaires.
Backward stepwise logistic regression indicated that greater family income, and support
from a partner or helpful other increased the likelihood that the survivor would consent to
have her partner contacted (χ
2
= 56.93, p<.001). Greater family income, better survivor
physical and emotional quality of life, and non-Hispanic White ethnicity increased the
likelihood of partner participation (χ
2
= 30.30, p<.001). The model predicting partner
retention from the first to second questionnaire was non-significant (χ
2
= 30.30, p<.001).
vii

The results indicate that ethnic minorities and individuals with lower SES and poorer
physical and mental quality of life are less likely to be included in psycho-oncology
couple’s research.
The second study (Chapter 2) examines emotional adjustment following breast
cancer treatment from a couples’ perspective. In this longitudinal study of 153 couples, I
examined partner understanding of fatigue and fear of recurrence among breast cancer
survivors during the post-treatment period, and if partner understanding contributed to
survivor emotional adjustment. Partner’s perception of survivor’s fatigue and fear of
recurrence did not significantly differ from the survivor’s own rating four months post-
treatment (T1), but by eight months post-treatment (T2), partners perceived survivors to
have significantly greater fatigue and fear of recurrence than the survivors reported. An
interaction effect was found at T1 such that among survivors with low levels of fatigue,
partner perception of fatigue was not associated with survivor emotional adjustment.
However, for survivors with high levels of fatigue, survivors whose partners perceived
them to have high fatigue had worse emotional adjustment than survivors whose partners
rated them low on fatigue. Partner under- and overestimation of survivor fear and fatigue
were associated with survivor positive affect. Finally, the study also examined partner’s
own fear of recurrence. Average partner fear of recurrence remained constant over time,
and was associated with less positive affect in the survivor within T1 and T2. Results
suggest that while the partner’s perspective of the survivor’s symptoms makes a limited
contribution to survivor adjustment, his own fear is detrimental to her positive mood.

viii

Preface
This work was supported by Public Health Service grant R01-CA63028 (to P. A.
Ganz) from the National Cancer Institute, National Institutes of Health and by California
Breast Cancer Research Program grant 5PB-0172 (to B. E. Meyerowitz).
Collaborators on this research include Beth E. Meyerowitz, Department of
Psychology, University of Southern California; Annette L. Stanton, Department of
Psychology, University of California, Los Angeles; Julia H. Rowland, Office of Cancer
Survivorship, National Cancer Institute; and Patricia A. Ganz, Division of Cancer
Prevention & Control Research and UCLA-LIVESTRONG Survivorship Center of
Excellence, Jonsson Comprehensive Cancer Center at UCLA; UCLA Schools of
Medicine & Public Health.

1

Chapter One: Characteristics of Breast Cancer Survivors that Predict
their Partners’ Participation in Research
Chapter One Abstract
This study examined demographic, treatment, relationship and quality of life
characteristics associated with recruitment and retention of partners of breast cancer
survivors from the Moving Beyond Cancer intervention study. Of 384 partnered
survivors who participated in the MBC intervention study, 280 provided consent for their
partners to be contacted, 193 partners completed the initial study questionnaire, and 164
partners completed both study questionnaires. Backward stepwise logistic regression
indicated that greater family income, and support from a partner or helpful other
increased the likelihood that the survivor would consent to have her partner contacted (χ
2

= 56.93, p<.001). Greater family income, better survivor physical and emotional quality
of life, and non-Hispanic White ethnicity increased the likelihood of partner participation
(χ
2
= 30.30, p<.001). The model predicting partner retention from the first to second
questionnaire was non-significant (χ
2
= 30.30, p<.001). The results indicate that ethnic
minorities and individuals with lower SES and poorer physical and mental quality of life
are less likely to be included in psycho-oncology couple’s research.

2

Chapter One Background
Breast cancer is increasingly recognized as a couples’ disease which affects both
the woman diagnosed as well as her partner (Manne & Badr, 2008). As more studies
examine psychosocial adjustment among couples facing cancer, the challenges of
recruiting and retaining patients and partners are becoming apparent. Recruitment rates
of couples less than 50% are not uncommon (Badr, Carmack, Kashy, Cristofanilli, &
Revenson, 2010; Gremore et al., 2011) and it is likely that participation is related to non-
random factors. Participation may be associated with demographic and illness
characteristics including emotional and physical well-being and treatment. In addition,
patients who are interested in participating in research with their partners, and are able to
convince their partners to participate, likely represent a different group of patients than
those who decline participation (Hagedoorn, Sanderman, Bolks, Tuinstra & Coyne,
2008).
Demographic and emotional factors have been associated with non-participation
in research on psychosocial adjustment following cancer. Ethnic minority patients appear
less likely to participate than Caucasian cancer patients (Badr & Carmack Taylor, 2008;
Badr et al., 2010; Bolger, Foster, Vinokur, & Ng, 1996; Sears et al., 2003). Fewer years
of education (Sears et al., 2003) and greater emotional distress have been associated with
non-participation (Badr et al., 2010; Norton & Manne, 2007), and younger age has been
associated with both participation (Sears et al., 2003) and non-participation (Mellon,
Kershaw, Northouse, & Freeman-Gibb, 2007). In addition to these demographic and
emotional characteristics, patients and partners who participate as a couple may have
3

stronger relationships or report greater levels of support than couples who do not
participate. However, since having a willing partner is typically an inclusion criterion for
dyadic studies, it has been difficult to identify individual and relationship factors
associated with participation.
This paper investigated demographic, cancer treatment, relationship and quality of
life characteristics associated with the recruitment and retention of the partners of breast
cancer survivors in a longitudinal study. This analysis was possible because the parent
study (Kraemer, Stanton, Meyerowitz, Rowland, & Ganz, in press) used a stepped
approach to survivor and partner recruitment. Survivors were recruited initially (see
Sears et al., 2003 for a full description), then asked for permission to allow the
researchers to invite their partners into the study. Thus, partners could be excluded
because the survivor refused to provide consent for her partner to be contacted, or even if
the survivor gave consent, the partner refused to participate or complete the study. We
sought to determine if demographic, cancer treatment, relationship or quality of life
characteristics were associated with partner completion of the study, and consequently
the disproportionate exclusion of some partners, and therefore couples, from dyadic
research among couples facing breast cancer.

4

Chapter One Method
Participants and Procedure
Data for this study come from the Moving Beyond Cancer (MBC) intervention
study and a second study of the partners of MBC participants. The MBC intervention
study was a multisite (Kansas, Los Angeles, and Washington, D.C.), randomized,
controlled, psycho-educational intervention study for women following completion of
treatment for Stage I or II breast cancer. Women were recruited to the study with a letter
from their physician, which was followed by a telephone call from MBC staff. A
detailed description of the MBC intervention study methodology and recruitment
procedures has been published previously (Ganz et al., 2004; Stanton et al., 2005). The
studies were approved by the Institutional Review Board at each of the participating
universities, and all participants provided informed consent. During informed consent,
survivors with partners were told that investigators would like to contact partners at a
later date, to request their participation in a separate study (Appendix 1). Survivor’s
participation in the MBC intervention study was not contingent on providing consent to
contact her partner.
Within four weeks of completing cancer treatment, MBC intervention participants
completed a mailed baseline questionnaire, and were randomized to one of three MBC
intervention arms. Intervention arms were: pamphlet only (National Cancer Institute
booklet, ―Facing Forward‖, 1994); pamphlet plus a video describing challenges and
coping strategies associated with making the transition from active treatment; or
pamphlet plus video plus two counseling sessions. After completing the intervention,
5

investigators contacted eligible partners about participating in a second study. The second
study was designed to examine partner perspectives following treatment and data were
collected via mailed questionnaires approximately two months (T1) and six months (T2)
following the MBC intervention. Partners were asked to complete study questionnaires
without discussing them with the MBC intervention study participant.
Of the 384 breast cancer survivors with male partners
1
, 280 (73%) provided
consent to have their partners contacted. Of those 280, 193 partners (69%) completed the
T1 questionnaire, and of those 193, 164 (85%) partners completed both T1 and T2
questionnaires.
Measures
The current study focused on three dichotomous outcomes: 1) survivor provided
consent to contact partner (no/yes); 2) partner completed T1 (no/yes); and 3) partner
completed T1 and T2 (no/yes). Survivor data came from the baseline questionnaire and
were used to predict the first two outcomes. Partner data came from the T1 questionnaire
and were used to predict the third outcome. Validated study measures are included in
Appendix 2.
Demographic characteristics. Survivor and partner demographics included Age,
Ethnicity (non-Hispanic white/non-White), Family income, and Employment status (Part
or Full-time /Unemployed). Survivor’s MBC trial intervention arm (2 dummy-coded
variables), Study site (2 dummy-coded variables) and survivor’s highest level of
Education were also included.

1
Nine survivors had female partners but were not included in the current study because the group was too
small for reliable analysis.
6

Cancer treatment. Survivors indicated which treatment(s) they received, namely
Mastectomy versus Breast-conserving Surgery, Chemotherapy, Radiation or Hormone
blockade (4 dichotomous variables).
Relationship characteristics. Survivors and partners independently rated their
Relationship Satisfaction with the Revised Dyadic Adjustment Scale (RDAS; Busby,
Crane, Larson, & Christensen, 1995). The RDAS is a 14-item self-report scale that
measures the level of agreement on various relationship issues and the frequency with
which couples engaged in specific behaviors. Survivors and partners rated items on a
variety of Likert-type scales, providing a total score that ranged from 0 to 69.
Cronbach’s alphas were > .89.
Length of Relationship was the number of years in the survivor/partner’s current
relationship, as indicated by the survivor.
Partner Support was rated by the survivor with a single item, ―How supportive has
your partner been with respect to your breast cancer experience?‖ Response options
ranged from 1 (not at all supportive) to 5 (extremely supportive).
Support from a Helpful Other was rated by the survivor with a scale developed by
Bolger and colleagues (1996). Survivors identified the person who was most helpful
regarding their diagnosis and treatment (e.g. partner, friend, family member) and
answered 8 questions about the support they received from him/her. Examples of items
include ―Provide you with encouragement and reassurance when you need it‖, ―Listen to
you when you need to talk about things that are important to you‖. Items were rated on
7

5-point Likert-type scales, ranging from 1 (not at all) to 5 (a great deal). Mean scores
ranged from 1 to 5. Cronbach’s alpha for support was .95.
Partner Provided Support was rated by the partner using the Bolger et al. (1996)
scale, as a self-rating of the support he provided to the survivor. Cronbach’s alpha was
.91.
Quality of Life. Survivors and partners rated their own physical and emotional
quality of life with the Physical Composite Scale (PCS) and Mental Composite Scale
(MCS) of the RAND SF-36 (Ware & Sherbourne, 1992). The PCS measured general
health, pain, physical functioning and impairment. The MCS measured energy,
emotional well-being, degree of social activity and impairment. Each scale was scored
from 0 to 100, with 100 being the maximum score. Cronbach’s alphas for the scales were
> .87.
To complement the broader construct of MCS, the Positive and Negative Affect
Scale (PANAS) (Watson, Clark, & Tellegen, 1988) measured specific domains of
positive and negative feelings. The PANAS contains 20 adjectives that describe mood;
10 assess positive affect (PA) and 10 assess negative affect (NA). At baseline and T1,
survivors and partners rated the extent to which they had experienced these emotions on a
5-point Likert-type scale, ranging from 1 (very slightly/not at all) to 5 (extremely). Total
scores can range from 10 to 50 for each scale. Cronbach’s alphas were > .90 for PA, and
> .86 for NA.

8

Statistical Analyses
Predictors were examined for multicollinearity. Receipt of radiation was collinear
with mastectomy versus lumpectomy (r
s
= -.72), thus radiation was not included as a
possible predictor. In the analysis that predicted partner completion of the T2
questionnaire, partner T1 MCS and partner T1 NA were collinear (r = -.76). Because
MCS is a broader measure of emotional well-being than NA, NA was not included as a
predictor of T2 questionnaire completion. Correlations among key study variables are
included in Appendix 3.
Backward stepwise logistic regression was used to predict study outcomes. A less
stringent inclusion criterion is recommended for stepwise regression (Tabachnick &
Fidell, 2007) and a predictor was removed from the model if p > .10. To control for the
effect of the MBC intervention study, Intervention Arms B and C (dummy-coded) and
Study site (dummy-coded for Los Angeles and Washington, D.C.) were forced to remain
in the equation. Logistic regression equations produce odds ratios (OR), which indicated
the likelihood of being in the predicted group of interest. An OR greater than one
indicated an increase in the predicted outcome, and an OR less than one indicated a
decrease in the likelihood of the predicted outcome. An OR equal to one indicated that
the variable was a non-significant predictor of the outcome. Sample sizes varied for each
outcome. Predicting consent to contact the partner was based on the 384 partnered
survivors. Partner completion of the T1 questionnaire was predicted for the 280
survivors who provided consent. Completion of the T2 questionnaire was predicted with
the 193 partners who completed T1 questionnaire.
9

Chapter One Results
Description of Sample Characteristics and Participation
Table 1 displays the demographics, cancer treatment, relationship characteristics
and quality of life of the survivors and partners. Survivors and partners were 29 to 88
Table 1. Sample Characteristics for Survivors and Partners
Variable (Possible Range) Survivors at Baseline (n=384) Partners at T1 (n=193)
Mean (SD) or Frequency
Demographics
Age (29-88) 55.85 (10.52) 57.93 (11.39)
Ethnicity 87% non-Hispanic white 94% non-Hispanic white
Current Employment
Retired/Unemployed/Volunteer 44% 30%
Part/Full-time 56% 70%
Family Income
Under $30,000 5% 2%
$30,001– 60,000 21% 16%
$60,001– 100,000 33% 36%
Over $100,000 41% 46%
Education
Less than college 13% —
Some college/2-year degree 24% —
College degree 35% —
Masters/doctoral degree 28% —
Cancer Treatment
Lumpectomy 65%
Mastectomy 35% —
Radiation 68% —
Chemotherapy 54% —
Hormone blockade 56% —
Relationship Variables
Length of relationship (1-58 years) 26.16 (13.35) 26.34 (13.02)
Relationship satisfaction (0-69) 49.82 (8.78) 50.64 (7.72)
Support from Partner (1-5) 4.66 (0.79) —
Support from Helpful Other (1-5) 4.02 (0.96) —
Partner provided support (1-5) — 4.03 (0.70)
Quality of Life
Physical Composite Scale (0-100) 45.43 (9.43) 52.67 (7.97)
Mental Composite Scale (0-100) 49.10 (9.81) 50.74 (9.47)
Positive Affect (10-50) 33.90 (7.59) 34.81 (7.08)
Negative Affect (10-50) 16.73 (5.99) 17.31 (6.96)

10

years old, predominantly Caucasian and upper-middle class. Most survivors received
breast-conserving surgery with adjuvant therapy. Survivors and partners reported
relationship satisfaction scores (RDAS) which were similar to norms based on non-
distressed couples reported by the scale developers (Busby et al., 1995). Survivors
reported receiving strong support from their partners, as well as from their primary
support person. Survivor and partner MCS scores were similar to the general population
norms for United States women and men (i.e. standardized M = 50, SD = 10; Ware,
2000), though survivor PCS fell ½ SD below the norm. For both survivors and partners,
mean NA fell in the lower quartile of the scale, and PA was above the scale midpoint.
The levels of NA and PA were similar to those that have been reported by other women
with breast cancer (Kernan & Lepore, 2009; Matthews & Cook, 2009).
Predictors of Consent and Participation
Table 2 displays results of the logistic regression equations. Backward stepwise
logistic regression analysis indicated that greater income, feeling supported by her
partner, and feeling supported by a helpful other significantly increased the likelihood
that a survivor provided consent to contact her partner. None of the other demographic,
cancer treatment, relationship or quality of life measures significantly predicted consent
to contact the partner (p’s >.11).
Among the 280 partners that investigators had permission to contact, 193
completed the T1 questionnaire. A backward stepwise logistic regression analysis with
survivor characteristics revealed that greater income and non-Hispanic white ethnicity
increased the likelihood of T1 partner participation. Additionally, survivor PCS and
11

MCS increased the likelihood of partner participation, although survivor PA decreased
the likelihood of partner participation. None of the other demographic, cancer treatment,
relationship or quality of life measures significantly predicted T1 partner participation
(p’s > .24).
Table 2. Backward Stepwise Regression Predicting Consent to Contact Partner and
Partner Participation

Consent to Contact Partner
1
Partner Completed T1
2

Predictor
3
OR (95% CI) OR (95% CI)
Income 1.43 (1.09, 1.87) 1.46 (1.06, 1.99)
Ethnicity — 3.32 (1.40, 7.87)
Partner Support 1.78 (1.20, 2.65) —
Support from Helpful Other 1.40 (1.78, 2.65) —
Mental Composite Scale — 1.07 (1.03, 1.11)
Physical Composite Scale — 1.04 (1.01, 1.07)
Positive Affect — 0.94 (0.89, 0.99)

Likelihood Ratio Test χ
2
(7, N = 384) = 56.93, p<.001 χ
2
(9, N = 280) = 30.30, p<.001
Note. Variables entered in model that did not reach significance: Age, Employment, Education, Mastectomy, Hormone
blockade, Chemotherapy, MBC Intervention and Site, Years in relationship, Relationship Satisfaction, Negative Affect.
1
n=384 partnered survivors,
2
n=280 survivors who provided consent to contact partners.
3
To account for variables
inherent to the MBC intervention study, Intervention Arms B and C, as well as Study Site dummy-variables were
forced to appear in the equation; these variables were not associated with study outcomes (p’s >.11).

Partner retention through T2 (n=164) was predicted with partner T1 data (n=193).
The overall backward stepwise regression model failed to reach significance, χ
2
(6, N =
193) = 7.55, p=.27. A chi-square difference test comparing the overall model to the
intercept-only model also indicated a non-significant result, χ
2
(5, N = 193) = 7.35, p=.20.
Chapter One Discussion
This study began with 384 eligible partners of breast cancer survivors and ended
with data from 164 partners, representing only 43% of those eligible. Substantial
12

declines in participation occurred at two time points. First, when investigators requested
permission to invite survivors’ partners to an additional study, and second when partners
decided whether to participate. This rate of participation is low, but is consistent with
much of the psycho-oncology literature (Fredman et al., 2009). The attrition analyses
presented in this study illuminated several individual and relationship characteristics
associated with couples’ willingness to participate in research following treatment for
breast cancer.
Greater income, greater partner support and greater support from a helpful other
increased the likelihood that a breast cancer survivor would provide consent for
investigators to contact her partner. While partner support may seem like an obvious
predictor, this study provided empirical support that has been lacking since couples are
usually recruited as a dyad. Support from a helpful other also increased the likelihood of
consent. Women were asked who was most helpful during their cancer experience, and
25% provided an answer. Of these women, friends and non-partner family members (e.g.
daughter, sibling) were the most common responses. Ambiguity remains about the most
supportive person for the 75% of women who did not name someone, and it is possible
that many of these women viewed their partner as the most supportive person. Although
partner support and support from a helpful other were significantly correlated (r = .65),
when they were both included in the equation that predicted survivor willingness to
contact her partner, they each significantly increased the likelihood of her providing
consent.
13

With partner support as a face valid predictor of consent, it is notable that
relationship satisfaction did not predict consent in the logistic regression. The bivariate
correlation between relationship satisfaction and consent was significant (r
s
= .21). In
addition, relationship satisfaction was significantly associated with partner support (r =
.53) and support from a helpful other (r = .69). The measures of support and relationship
satisfaction have overlapping variance, but are still unique. In particular, the RDAS does
not specifically query about feeling cared for or supported in the relationship. In two
separate post hoc analyses, we removed partner support and support from helpful other as
predictors, but neither relationship satisfaction nor any other predictors gained or lost
significance. Our results suggest that feeling supported was a more important predictor
of survivor willingness for the partner to participate, than general relationship
satisfaction.
Higher income was the only characteristic associated with a greater likelihood of
both consent and partner participation. Lower socioeconomic status (SES) has been
associated with lower participation in cancer trials (Gross, Filardo, Mayne, & Krumholz,
2005) and psychological research in general (Reid, 2011). Possible explanations for SES
discrepancies in the breast cancer literature have been offered (Gross et al.), including the
negative correlation between SES and disease severity, as well as greater logistical
barriers to participation (e.g. inflexible work schedule, inconvenient travel). However,
these reasons are not as relevant to the current study since all survivors had localized
cancer, participation required a minimal amount of time and questionnaires could be
completed at home. While the reasons for the disparity are unclear, it is apparent that
14

each step of partner recruitment restricted the range of income represented in the final
sample.
In addition to income, partners of non-Hispanic white survivors were more likely
to complete the first questionnaire than partners of ethnic minorities. Of the 193 partners
that completed the T1 questionnaire, 94% were non-Hispanic white, 3% African-
Americans, 2% Asian-American, and 1% Hispanic-American. The underrepresentation
of ethnic minorities in cancer research is not a new finding (Murthy, Krumholz & Gross,
2004). However there are debates about whether underrepresentation reflects
unwillingness to participate or inadequate recruitment of ethnic minorities. A review of
several population-based studies (Wendler et al., 2006) found ethnic minorities were
willing to participate at the same rate as non-ethnic minorities, but recruitment strategies
must be bolstered in order to attract more ethnic minorities. The findings of the current
study and the parent MBC intervention study (Sears et al., 2003) differ from the Wendler
et al. conclusion, in that ethnic minorities were significantly less likely to participate in
the MBC intervention study, or have partners willing to participate in the second study.
In order to increase research participation among ethnic minorities, it must be a
designated priority during study design since population-based sampling is unlikely to
yield sufficient representation (Yancey et al., 2006). Successful recruitment strategies of
ethnic minorities include collaborating with community organizations, oversampling,
making personal contact with potential participants, telephone follow-ups, and offering
incentives (Burlew et al. 2011, Yancey et al.). While more deliberate and extensive
recruitment of ethnic minorities is necessary in cancer research, once recruited there still
15

appear to be additional barriers to participation. Further research is needed to identify
these barriers and implement strategies for retaining ethnic minority participants.
Finally, survivors with greater PCS and MCS were more likely to have partners
who completed the first questionnaire. Better quality of life following treatment
completion may reflect a mindset that the cancer is behind them, which may have helped
partners be more willing to participate in a study about the cancer experience. It is
important to note that although the MCS and PCS odds ratios look small (1.07 and 1.04,
respectively), the effects are larger than they appear because of the 0 to 100 scale of MCS
and PCS. An odds ratio of 1.07 for a one point increase in MCS is equivalent to an odds
ratio of 1.97 for a 10 point increase (i.e. 1 SD). The finding that greater survivor PA
decreased the likelihood that partners would participate is inconsistent with the MCS
finding. This could suggest that a middle ground of emotional well-being is optimal for
research participation. That is, after accounting for general quality of life, perhaps
partners who saw greater PA in the survivor did not see a need to participate, or may not
have wanted to spend more time on activities related to the cancer experience.
Because studies that focus on couples typically recruit the couple as a unit, many
of the characteristics revealed in our analyses have been obscured in the literature. By
recruiting survivors and partners separately, it is possible that a greater percentage of
couples were enrolled because the study did not appear to be about couples, but rather
about each member of the dyad’s adjustment following treatment for breast cancer.
Given this stepped recruitment strategy, it is unclear how these results generalize to other
studies of couples facing cancer in which the couple is recruited together. We may have
16

been able to improve recruitment if MBC intervention study investigators had met with
potential participants in-person, rather than through telephone-only contact.
The profile of cancer survivors who are less likely to be included in psycho-
oncology couple’s research include ethnic minorities, lower SES and poorer physical and
mental quality of life. Not only does this decrease the range of experiences captured by a
study, it perpetuates the underrepresentation of lower income and ethnic minorities in
research, and fails to include individuals with greater levels of suffering.
While our findings offer empirical support that psycho-oncology research with
couples is likely skewed, these results require replication. This is particularly important
when findings are based on stepwise regression analyses. However, a barrier to
replication is that data cannot be collected from individuals who do not consent to
participate. This suggests the need for more efficient screening measures prior to
recruitment. Given the predictive value found for partner support in this study,
researchers may find value in using a single item to assess support when screening
couples for study inclusion. Greater use of a question such as ―how supportive has your
partner been with respect to…” would strengthen attrition analyses, and possibly
corroborate results of the current study. It would also be beneficial to screen each
member of a couple separately for inclusion in a study, in order to examine factors
associated with gender or role (e.g. patient/survivor or partner).

17

Chapter Two: Association between Partner’s Understanding of Breast Cancer Survivor’s
Fatigue and Fear of Recurrence and Survivor’s Emotional Adjustment
Chapter Two Abstract
This longitudinal study examined partner understanding of fatigue and fear of
recurrence among breast cancer survivors during the post-treatment period, and if partner
understanding contributed to survivor emotional adjustment. Data come from the
Moving Beyond Cancer intervention study for breast cancer survivors following
treatment completion, and a second study of their male partners (n=153 couples).
Partner’s perception of survivor’s fatigue and fear of recurrence did not significantly
differ from the survivor’s own rating four months post-treatment (T1), but by eight
months post-treatment (T2), partners perceived survivors to have significantly greater
fatigue and fear of recurrence than the survivors reported. An interaction effect was
found at T1 such that among survivors with low levels of fatigue, partner perception of
fatigue was not associated with survivor emotional adjustment. However, for survivors
with high levels of fatigue, survivors whose partners perceived them to have high fatigue
had worse emotional adjustment than survivors whose partners rated them low on fatigue.
Partner under- and overestimation of survivor fear and fatigue were associated with
survivor positive affect. Finally, the study also examined partner’s own fear of
recurrence. Average partner fear of recurrence remained constant over time, and was
associated with less positive affect in the survivor within T1 and T2. Results suggest that
while the partner’s perspective of the survivor’s symptoms makes a limited contribution
to survivor adjustment, his own fear is detrimental to her positive mood.
18

Chapter Two Background
Completing treatment for breast cancer is a milestone and a time of mixed
emotions. While many women feel relieved, they also feel anxious and apprehensive
about the transition (Hewitt, Greenfield, & Stoval, 2006). During this time, survivors and
their partners try to move beyond the cancer experience to a life that is not organized
around medical appointments and treatment (Ganz et al., 2004). However, this transition
is made more challenging by the emergence of post-treatment concerns and side-effects
(Bower, 2008).
Two of the most common concerns following treatment are fatigue and fear of
recurrence (Bower, 2008; Stanton et al., 2005; Vickberg, 2003). Fatigue often begins
during treatment, and can continue for several years following treatment (Ganz & Bower,
2007; Minton & Stone, 2008). Cancer survivors describe cancer-fatigue as more severe
and disabling than fatigue related to lack of sleep, and it is associated with symptoms of
depression and impaired quality of life (Bower et al., 2000; Ganz & Bower, 2007).
Despite the end of treatment, many breast cancer survivors describe cancer as something
that never really goes away, and worry about a recurrence (Stanton, Danoff-Burg &
Huggins, 2002; Vickberg, 2003). For some, fear of recurrence remains moderate and
stable for years (Stanton et al., 2002), and in others it can fluctuate and increase over time
(Lebel, Rosberger, Edgar, & Devins, 2007). Fear of recurrence has been associated with
anxiety and emotional distress (Armes et al., 2009; Vickberg, 2003).
19

Given the expectation that life will return to normal after treatment, partners of
breast cancer survivors may not be attuned to what the survivor is going through.
2
The
partner’s perception of the survivor’s experience could influence how he acts towards
her, which could impact her adjustment. In particular, partner perception of survivor
fatigue or fear of recurrence could inform the degree of support he provides. If a partner
is inaccurate about what the survivor is experiencing, he might misjudge the kind of
support that would be helpful. Also, since feeling understood can diminish distress
(Adler, 2002), partner perception may buffer the association between greater fear of
recurrence or fatigue and emotional adjustment for the survivor.
Moreover, it is unknown how the direction of partner understanding (i.e.
underestimating, overestimating) might contribute to survivor adjustment. In non-cancer
samples, underestimating illness symptoms has been associated with worse depression
and distress (Cano, Johansen, & Franz, 2005; Miaskowski, Zimmer, Barrett, Dibble, &
Wallhagen, 1997), and overestimating symptoms has been hypothesized to be detrimental
to patient adjustment (Heijmans, De Ridder, & Bensing, 1999). However, the current
literature on partner underestimating and overestimating is limited to non-cancer samples,
typically focuses on general illness perceptions (e.g. cause and timeline) and rarely
examines disease-specific aspects of illness, such as fear of recurrence or fatigue.
In addition to sorting out survivors’ symptoms, partners have also been going
through the cancer experience and have their own reactions and feelings. Without

2
This study focuses on male partners of women with breast cancer. We realize not all partners of women
with breast cancer are male, and this limits the scope of the study. However, for the purpose of this study,
partners are referred to as male.
20

receiving cancer treatment, partners will not experience the same fatigue as survivors.
However, fear of recurrence is prominent among partners (Gotay, 1984; Mellon,
Northouse, & Weiss, 2006; Mellon et al., 2007). In fact, partners sometimes have greater
fear of recurrence than the survivors themselves (Mellon, Kershaw, Northouse, &
Freeman-Gibb, 2007). In the chronic pain literature, emotional benefits are seen in
couples in which both partners have pain, as compared to couples in which one person
has pain (Johansen and Cano, 2007). This suggests that a similar level of fear of
recurrence within a couple could contribute to survivor’s emotional adjustment. On the
other hand, having a shared experience could be detrimental as well. In particular, if the
survivor and partner are both distressed, the additional burden of the partner’s own fear
of recurrence could be negatively associated with survivor adjustment. This question
remains unexamined in the literature.
The Current Study
The purpose of this study was to assess how well partners understand concerns of
breast cancer survivors during the post-treatment period, and if partner understanding
contributes to survivor adjustment, above and beyond her own concerns. We expected
the months following treatment completion to be an active period of adjustment since
transitions are associated with fluctuations in mood (Hewitt et al., 2006). Thus we used a
longitudinal design to examine mood up to eight months following treatment. We
examined transient aspects of affect such as mood, as well as a clinically relevant
measure of depressive symptoms. We chose to examine both positive and negative
aspects of mood, as positive affect is less frequently included in studies of adjustment
21

following cancer, and is orthogonal to negative affect (Cohen & Pressman, 2006;
Watson, Clark & Tellegen, 1988). Finally, since the quality of a relationship could be
confounded with providing support and emotional adjustment, we included relationship
satisfaction as a possible control variable.
This paper addressed several hypotheses and questions. We predicted that
survivor’s fear of recurrence and fatigue would be associated with her emotional
adjustment, and that the partner’s perception of her fear of recurrence and fatigue would
explain additional variance in her emotional adjustment. We also hypothesized that the
association between the survivor’s fear of recurrence and fatigue and survivor adjustment
would be moderated by the partner’s perception of fear of recurrence and fatigue. While
women lower in fear or fatigue were expected to have better adjustment than women with
greater fear or fatigue, regardless of partner perception, partner perception may buffer the
association between high fear or fatigue and survivor emotional adjustment. Specifically,
for women high in fear or fatigue, we hypothesized that they would have better emotional
adjustment if their partner perceived their fear and fatigue as high rather than low.
Regarding support, we hypothesized that the association between partner perception of
survivor fatigue and fear of recurrence and survivor emotional adjustment would be
mediated by support provided by the partner. We also hypothesized that partner
underestimation of fear of recurrence and fatigue would be negatively associated with
emotional adjustment. Finally, the current study examined whether overestimation of
fear of recurrence and fatigue would be associated with survivor emotional adjustment,
22

and also examined the association between a partner’s own fear of recurrence and
survivor’s emotional adjustment.
Chapter Two Method
Data for this study come from the Moving Beyond Cancer (MBC) intervention
study and a second study of the partners of MBC participants. The MBC intervention
study was a multisite (Kansas, Los Angeles, and Washington, D.C.), randomized,
controlled, psycho-educational intervention study for women following completion of
treatment for Stage I or II breast cancer. A detailed description of the study methodology
and recruitment procedures has been published previously (Ganz et al., 2004; Stanton et
al., 2005). The studies were approved by the Institutional Review Board at each of the
participating universities, and all participants provided informed consent.
Participants and Procedures
Potential MBC intervention study participants were referred by surgical and
medical oncologists in Washington D.C., Los Angeles, and two cities in Kansas.
Inclusion criteria included 1) diagnosis of Stage I or II breast cancer, 2) surgery within 6
weeks prior to recruitment, and 3) surgery as the initial therapy. Survivors were excluded
if they had a prior history of breast cancer, had inflammatory breast cancer, had
neoadjuvant chemotherapy or bone marrow transplant, had protracted reconstructive
surgery or complications related to surgery, had severe physical, cognitive, or psychiatric
illness, were unable to read and/or write in English, or were currently participating in
another clinical trial with a quality of life intervention. As described by Stanton et al.
(2005), after completing a baseline questionnaire (within 6 weeks after surgery) women
23

were randomized to one of the three MBC intervention study arms. Women received
either: 1) standard booklet (National Cancer Institute booklet, ―Facing Forward‖, 1994)
with general information for cancer survivors (MBC Intervention A); 2) standard booklet
plus a peer-modeling video (MBC Intervention B); or 3) standard booklet plus video plus
brief psychoeducational counseling (MBC Intervention C). The intervention was
delivered following the end of the survivor’s last component of treatment. To allow time
for the intervention, data for this study were collected via mailed questionnaires at T1 (4
months following treatment completion) and T2 (8 months following treatment
completion).
In order to examine dyadic perspectives following treatment, data were also
collected from the partners of MBC intervention study participants in a second study.
During informed consent, investigators asked partnered survivors for permission to invite
their partner to participate in a second study. Survivor’s participation in the MBC
intervention study was not contingent on providing consent to contact her partner. 384
women had male partners.
3
Of those 384, 280 survivors (73%) consented to have their
partners contacted. Questionnaires were mailed to eligible partners who were instructed
to complete the questionnaires separately from the MBC intervention study participant.
Of the 280 partners we had permission to contact, 193 partners agreed to participate and
completed the first questionnaire (T1). The second questionnaire (T2) was mailed to
partners four months following T1 (eight months following treatment completion).

3
Nine survivors had female partners but were not included in the current study because the group was too
small for reliable analysis.
24

Validated measures are included in Appendix 4. Complete data for both time periods are
available for 153 couples.
Measures
Demographic and medical characteristics. Survivor characteristics included Age,
Income, Education, Employment status (Part/Full-time or Unemployed), Ethnicity
(Caucasian or non-Caucasian), and the Study site at which they participated (Washington
DC, Los Angeles, Kansas). Study site was dummy-coded such that Los Angeles was the
comparison group. Survivors also provided information about their cancer treatment (i.e.,
Mastectomy versus Breast-conserving surgery, Chemotherapy, Radiation and Hormone
blockade). Two dummy-coded variables were created to account for the three MBC
intervention arms; with MBC Intervention A as the comparison group.
Relationship Satisfaction. The Revised Dyadic Adjustment Scale (RDAS; Busby,
Crane, Larson, & Christensen, 1995) measured the survivor’s perceived quality of the
dyadic relationship at T1. The RDAS is a 14-item self-report scale that measures the
level of agreement on various relationship issues and the frequency with which a couple
engages in specific behaviors. Survivors rated items on a variety of Likert-type scales,
providing a total dyadic adjustment score, ranging from 0 to 69. A higher score indicates
greater relationship satisfaction. Cronbach’s alpha = .85.
Key predictors.
Survivor Fear of Recurrence. Survivor Fear of Recurrence was measured at T1
and T2 with three items from a scale developed by Northouse (1981). The items were ―I
would like to feel more certain about my health‖, ―I worry that my cancer will return‖, ―I
25

am preoccupied with thoughts of the cancer returning‖. The items were answered on a
Likert-type scale that ranged from 1 ―Strongly Disagree‖ to 5 ―Strongly Agree‖. At T1
and T2, Cronbach’s alpha for this measure was > .75.
Survivor Fatigue. Survivor Fatigue was measured at T1 and T2 with five items
from the Fatigue Symptom Inventory, a measure developed specifically for people with
cancer (FSI; Hann et al., 1998). Survivors rated their level of fatigue on average during
the last week, and how much in the past week fatigue interfered with their general
activity level, ability to concentrate, relations with other people, and mood. The items
were scored on a 0 – 10 Likert-type scale, in which 0 = No interference and 10 = Extreme
interference. Cronbach’s alpha for this measure was > .91.
Partner Perception of Survivor Fear of Recurrence & Partner Fear of Recurrence.
The wording of the three Fear of Recurrence items was altered for the partner to rate his
perception of her fear (e.g. my partner worries that her cancer will return), as well as his
own fear (e.g. I worry that her cancer will return). At T1 and T2, Cronbach’s alpha for
these measures was > .73.
Partner Perception of Survivor Fatigue. Using the same five items of the FSI,
partners rated the survivors’ average level of fatigue and how much the fatigue interfered
with her functioning during the past week. Cronbach’s alpha for this measure was > .94.
Partner Overestimation and Underestimation. Overestimation and
Underestimation are dummy-coded variables which were defined with a 2-step process.
First, a difference score was calculated (e.g. Partner perception of Fear of Recurrence –
Survivor Fear of Recurrence). Then the distribution of the difference score was divided
26

into 1 SD categories. Overestimation was assigned to partners whose difference score
was equal to or greater than 1 SD from zero, which would represent perfect
understanding. Underestimation was assigned to partners whose difference score was at
least 1 SD less than zero. Partners with difference scores within 1 SD of zero represented
accurate understanding.
Partner Provided Support. Support provided to the survivor was measured at T1
and T2 with items developed by Bolger, Foster, Vinokur, & Ng (1996). Partners were
asked 8 questions about providing support to the survivor. For example, ―How much do
you currently: 1) provide her with encouragement and reassurance when she needs it; or
2) listen to her when she needs to talk about things that are important to her.‖ Items were
rated on a 1-5 Likert-type scale, ranging from 1 (―Not at all‖) to 5 (―A great deal‖). At
both T1 and T2 Cronbach’s alpha for Support Provided was > .91.
Survivor emotional adjustment.
Positive and Negative Affect (PA & NA). The Positive and Negative Affect
Schedule (PANAS) (Watson et al., 1988) measured survivor affect at T1 and T2. This
scale lists 20 adjectives that describe mood; 10 assess positive affect (PA) and 10 assess
negative affect (NA). Survivors rated the extent to which they had experienced these
emotions in the past four weeks on 5-point Likert-type scales, ranging from 1 (―Very
slightly or Not at all‖) to 5 (―Extremely‖). Total scores can range from 10 to 50 for each
scale, with higher scores indicative of higher levels of the type of mood. For T1 and T2,
Cronbach’s alphas were > .90 for PA, and >.83 for NA.
27

Depression. Survivor depression symptoms were assessed at T1 and T2 using a
modified version of the Center for Epidemiological Studies Depression Scale (CES-D;
Radloff, 1977). In reference to the past week, survivors rated each item on a scale of 0-3,
where 0 represents ―rarely or none of the time (less than 1 day/week)‖ and 3 represents
―most or all of the time (5-7 days/week).‖ Because fatigue is a symptom of depression,
we modified the scale by removing the five-item somatic subscale (e.g. felt everything
was an effort, sleep was restless). The modified 15 item CES-D significantly correlated
with the full CES-D (r =.97). Reliability of the modified scale was good at both T1 and
T2 (α > .85). To assist comparison to other studies, the mean of the full CES-D is
included with the results. Full scale CES-D scores of 16 or greater are consistent with
symptoms similar to depression.
Statistical Analyses
Covariates were determined through regression equations in which potential
covariates (demographics, medical characteristics and relationship satisfaction) were
entered as a single block to predict Depression, NA and PA. Variables were included as
covariates in the study analyses if they significantly predicted Depression, NA or PA (p <
.05). Relationship Satisfaction was determined to be a negative covariate of Depression
and NA (at T1 and T2) and positive covariate of PA (T1 only). Age was a negative
covariate of NA (at T1 and T2). Analyses also controlled for variables inherent to the
study (i.e. MBC intervention study arm and Study site).
Hypotheses were tested with hierarchical multiple regression analyses, and no
instances of multicollinearity were present. Correlations among key survivor and partner
28

variables are included as Appendix 5. In each equation, Block 1 controlled for Study site,
MBC intervention study arm, and significant covariates. Subsequent blocks contained
the variables for a unique hypothesis. The first hypothesis, tested in Block 2, was that the
survivor’s ratings of the cancer-related variables (Fear of Recurrence and Fatigue) would
be associated with her emotional adjustment. The second hypothesis, tested in Block 3,
examined the additional variance explained by the partner’s perceptions of her Fear of
Recurrence and Fatigue. The third hypothesis, tested in Block 4, was that the partner’s
perception of Fear of Recurrence and Fatigue would moderate the association between
the survivor’s own ratings of Fear of Recurrence and Fatigue, and her emotional
adjustment. Moderation was tested by forming a cross-product of the centered survivor
and partner perception variables for both Fear of Recurrence and Fatigue. We followed
Aiken and West’s (1991) method for interpreting and graphing interaction effects. Thus,
figures depict regression lines based on one standard deviation above and below an
estimated mean. The fourth hypothesis about mediation was analyzed with the Baron and
Kenny (1986) procedure.
The regression analysis with partner overestimation and underestimation followed
a similar design as that reported above: Block 1 contained standard covariates, and Block
2 contained survivor ratings of Fear of Recurrence and Fatigue. However, Block 3
contained partner Overestimation and Underestimation of Fear of Recurrence and
Fatigue. We also used hierarchical regression to examine whether the partner’s own Fear
of Recurrence predicted additional variance above that predicted by the survivor’s Fear of
29

Recurrence. The regression equations included the standard covariates in Block 1,
survivor Fear of Recurrence in Block 2, and partner Fear of Recurrence in Block 3.
We planned to conduct longitudinal regression analyses to predict change in
emotional adjustment; however the outcome variables did not change over time (see
Table 3). Since key predictors exhibited change over time, we expanded the analytic plan
to examine within time associations as well as associations over time.

Table 3. Adjusted Means and Change Over Time for Key Study Variables

Variable (Possible range) 4 mo. Post-
treatment (T1)
8 mo. Post-
treatment (T2)

Survivor M (SD) M (SD) F (df) p
CES-D (0-60) 8.48 (7.94) 7.87 (7.22) 2.91 (1,144) .09
Depression (0-45) 5.55 (6.02) 5.08 (5.39) 1.87 (1,143) .17
Negative Affect (10-50) 15.79 (5.29) 15.68 (4.89) 1.33 (1,145) .25
Positive Affect (10-50) 35.43 (7.48) 35.62 (6.96) 2.87 (1,146) .09
Relationship Satisfaction (0-69) 51.12 (7.58) 51.58 (7.30) 0.01 (1, 146) .91
Fear of Recurrence (1-5) 3.09 (.95) 2.95 (.96) 4.45 (1,144) .04
Fatigue (0-10) 2.26 (1.92) 1.97 (1.92) 0.79 (1,146) .38
Partner
Perception of Survivor Fear of
Recurrence (1-5)
3.18 (1.10) 3.26 (1.05) 0.05 (1,146) .83
Perception of Survivor Fatigue
(0-10)
3.38 (2.31) 3.21 (2.35) 2.92 (1,146) .09
Support Provided (1-5) 4.04 (.70) 3.99 (.72) 3.59 (1,146) .06
Fear of Recurrence (1-5) 2.98 (1.04) 2.85 (1.00) 0.60 (1,144) .44
Note. Repeated measures ANCOVA (controlling for MBC Intervention B, MBC Intervention C, Study site
(Kansas, Washington, D.C.) and significant covariates). Depression measured with the modified CES-D (15
items with Somatic subscale omitted).
30

Chapter Two Results
Demographic and Medical Characteristics
Survivors were 29 - 85 years old (M = 56.67, SD = 10.31) and predominantly
non-Hispanic white (95%). For their primary treatment, 68% of women received a
lumpectomy, and 32% received a mastectomy. Many women also received adjuvant
treatments, including radiation (69%), chemotherapy (55%), and hormone therapy (71%).
Survivors’ partners were 30 – 88 years old (M = 59.11, SD = 11.48) and predominantly
non-Hispanic white (95%).
Survivor Emotional and Dyadic Adjustment
On average, survivors reported low levels of depressive symptoms at both time
points (see Table 3). Mean NA fell in the lower quartile of the scale, and PA was above
the scale midpoint. The levels of NA and PA are similar to what has been reported in
other studies of women with breast cancer (Kernan & Lepore, 2009; Matthews & Cook,
2009). As seen in Table 1, results of a repeated measures ANCOVA indicated that
Depression, NA, and PA did not change significantly over time. Survivors in this study
reported good relationship satisfaction scores (RDAS) that were comparable to norms of
non-distressed couples (Busby et al., 1995).
Survivor and Partner Perception of Fear of Recurrence and Fatigue
Survivor Fear of Recurrence significantly decreased over time, and survivor
Fatigue remained constant (Table 3). Partner perception of survivor Fear of Recurrence
and Fatigue did not significantly change over time. Consistent with these trajectories, a
2x2 repeated measures ANCOVA indicated that survivor and partner perception ratings
31

of Fear of Recurrence did not significantly differ at T1, but by T2, partners perceived
survivors to have significantly greater Fear of Recurrence than the survivors reported
(F(1,145)=5.83, p=.02). A similar pattern was seen for Fatigue. In a 2x2 repeated
measures ANCOVA, survivor and partner perception ratings of Fatigue did not differ at
T1, but by T2, partners perceived survivors to have significantly greater Fatigue than the
survivors reported (F(1,147)=5.08, p=.03). Table 4 describes the distribution of partner
Underestimation and Overestimation of survivor’s Fear of Recurrence and Fatigue. As
seen in Table 4, partners overestimated Fatigue symptoms more often than Fear of
Recurrence symptoms.
Table 4. Distribution of Partner Underestimation and Overestimation of Fear of
Recurrence and Fatigue
Fear of Recurrence Fatigue
T1 T2 T1 T2
Partner Underestimates survivor’s symptoms 13% 9% 7% 6%
Partner Estimates accurately (within 1 SD) 71% 69% 64% 63%
Partner Overestimates survivor’s symptoms 16% 22% 29% 31%

Survivor and Partner Predictors of Emotional Adjustment
The first four hypotheses were tested with hierarchical linear regression equations
that predicted emotional adjustment at T1 and T2. Results of the final equations within
T1, within T2 and over time are detailed in Tables 5-7. The results indicated support for
the first hypothesis within time and over time. Survivor Fatigue was always positively
associated with Depression and NA, and negatively associated with PA. Survivor Fear of
Recurrence was always positively associated with Depression and NA, but not associated
with PA. For the second hypothesis, we failed to find support within or over time, as
32

neither of the partner variables in Block 3 (partner perception of Fear of Recurrence,
partner perception of Fatigue) significantly predicted additional variance in Depression,
NA or PA. Given the lack of an association between partner perception of Fear of
Recurrence or Fatigue and survivor emotional adjustment, the mediation hypothesis
could not be tested.
Table 5. Results of Final Regression Equations Predicting T1 Emotional Adjustment
Variable T1 Depression T1 NA T1 PA
β ΔR
2
β ΔR
2
β ΔR
2

Block 1: Covariates .14* .11* .12*
Kansas -.01 .01 .05
Washington, D.C. -.07 -.01 .07
MBC Intervention B .05 .02 -.08
MBC Intervention C -.04 -.002 .18*
Survivor Age - -.06 -
Survivor Relationship
Satisfaction
-.28* -.16* .17*
Block 2: Survivor Ratings .25* .20* .16*
T1 Fear of Recurrence .20* .33* .001
T1 Fatigue .32* .21* -.31*
Block 3: Partner Ratings .01 .02 .03
T1 partner perception of
Fear
.03 -.06 -.08
T1 partner perception of
Fatigue
.09 .16 -.13
Block 4: Interaction Terms .04* .04* .04*
T1 Survivor X partner
perception of Fear .05

.10

-.004

T1 Survivor X partner
perception of Fatigue .21*

.16*

-.20*

Adj R
2
=.40* Adj R
2
=.30* Adj R
2
=.29*
Note. NA = Negative Affect, PA = Positive Affect. Table depicts β weights from the final equation of 3 separate
regression equations predicting T1 Depression, NA and PA. Kansas, Washington, D.C., MBC Intervention B,
and MBC Intervention C were entered as dummy-coded variables. *p < .05

33

Table 6. Within T2 Regression Equations Predicting Emotional Adjustment
Variable T2 Depression T2 NA T2 PA
β ΔR
2
β ΔR
2
β ΔR
2

Block 1: Covariates .16* .16* .05
Kansas -.15* -.15 .15
Washington, D.C. -.11 .01 .11
MBC Intervention B .05 .04 -.05
MBC Intervention C .11 .13 .10
Survivor Age - -.08 -
Survivor Relationship
Satisfaction
-.20* -.21* -
Block 2: Survivor Ratings .21* .15* .24*
T2 Fear of Recurrence .23* .28* -.15
T2 Fatigue .44* .27* -.40*
Block 3: Partner Ratings .01 .004 .01
T2 partner perception of
Fear
.09 -.01 .01
T2 partner perception of
Fatigue
-.09 -.05 -.11
Block 4: Interaction Terms .02 .01 .004
T2 Survivor X partner
perception of Fear .11

.14

.06

T2 Survivor X partner
perception of Fatigue -.12

.01

.04

Adj R
2
=.35 Adj R
2
=.27 Adj R
2
=.25
Note. NA = Negative Affect, PA = Positive Affect. Table depicts β weights from the final equation of 3 separate
regression equations predicting T2 Depression, NA and PA. Kansas, Washington, D.C., MBC Intervention B, and
MBC Intervention C were entered as dummy-coded variables. *p < .05

Within T1, the results indicated partial support for the moderation hypothesis.
The interaction term for Fatigue significantly explained variance in T1 Depression, NA
and PA. As seen in Figure 1, among survivors with low levels of Fatigue, partner
perception of Fatigue was not associated with Depression. However, for survivors with
high levels of Fatigue, women whose partners perceived them to have high Fatigue had
greater depression than women with high Fatigue whose partners rated them low on
Fatigue. A similar pattern was seen for T1 NA and T1 PA (see Figures 2-3). There was
no significant moderation effect of Fatigue within T2 or over time. The interaction term
34

for survivor Fear of Recurrence by partner perception of Fear of Recurrence did not
predict emotional adjustment within time or over time.

Table 7. Over Time Regression Equations Predicting Emotional Adjustment
Variable T2 Depression T2 NA T2 PA
β ΔR
2
β ΔR
2
β ΔR
2

Block 1: Covariates .13* .12* .05
Kansas -. 15 -.15 .15
Washington, D.C. -.14 -.01 .15
MBC Intervention B .10 .09 -.04
MBC Intervention C .14 .17 .08
Survivor Age - -.11 -
Survivor Relationship
Satisfaction
-.24* -.12 -
Block 2: Survivor Ratings .12* .09* .08*
T1 Fear of Recurrence .22* .26* -.16
T1 Fatigue .25* .17* -.18
*

Block 3: Partner Ratings .01 .02 .02
T1 partner perception
of Fear
-.11 -.18 .11
T1 partner perception
of Fatigue
-.02 .10 -.18
Block 4: Interaction Terms .02 .001 .02
T1 Survivor X partner
perception of Fear -.13

-.02

.12

T1 Survivor X partner
perception of Fatigue -.02

-.02

.07

Adj R
2
=.22 Adj R
2
=.17 Adj R
2
=.11
Note. NA = Negative Affect, PA = Positive Affect. Table depicts β weights from the final equation of 3 separate
regression equations predicting T2 Depression, NA and PA. Kansas, Washington, D.C., MBC Intervention B, and
MBC Intervention C were entered as dummy-coded variables. *p < .05

35

Figure 1. Partner perception of fatigue moderates association between survivor fatigue
and depressive symptoms at T1.

Figure 2. Partner perception of fatigue moderates association between survivor fatigue
and negative affect at T1.

0.00
2.00
4.00
6.00
8.00
10.00
12.00
14.00
16.00
18.00
20.00
Low Fatigue Medium Fatigue High Fatigue
Low
Medium
High
19.00
20.00
21.00
22.00
23.00
24.00
25.00
26.00
Low Fatigue Medium Fatigue High Fatigue
Low
Medium
High
Partner Perception of Survivor Fatigue
T1 Survivor Fatigue
T1 Depression
Partner Perception of Survivor Fatigue
T1 Survivor Fatigue
T1 Negative Affect
36

Figure 3. Partner perception of fatigue moderates association between survivor fatigue
and positive affect at T1.

Partner Over- and Underestimation of Survivor Fear of Recurrence and Fatigue
Results of the hierarchical regressions with partner Overestimation and
Underestimation as the key variables found partial support when predicting PA.
Overestimation or Underestimation of fear of recurrence or fatigue was never associated
with NA or Depression. In the final equation that predicted T1 PA (Adj R
2
= .30,
p<.001), MBC Intervention C (β = .17, p=.04), Relationship Satisfaction (β = .17, p=.02)
and partner Underestimation of survivor Fatigue (β = .29, p=.001) were positively
associated with T1 PA, and survivor Fatigue was negatively associated with T1 PA (β = -
.56, p<.001). For the within T2 regression predicting PA (Adj R
2
= .28, p<.001), survivor
Fear of Recurrence (β = -.20, p=.02), survivor Fatigue (β = -.44, p<.001), and partner
0.00
5.00
10.00
15.00
20.00
25.00
30.00
35.00
Low Fatigue Medium Fatigue High Fatigue
Low
Medium
High
Partner Perception of Survivor Fatigue
T1 Survivor Fatigue
T1 Positive Affect
37

Overestimation of survivor Fear of Recurrence (β = -.18, p=.03) were negatively
associated with T2 PA. Finally, in the over time equation that predicted T2 PA (Adj R
2
=
.12, p=.001), living in Kansas (β = .18, p=.04) was positively associated with PA, and T1
survivor Fatigue (β = -.31, p=.002) and T1 partner Underestimation of survivor Fear of
Recurrence (β = -.16, p=.05) were negatively associated with T2 PA. No other
significant associations were found between Underestimation or Overestimation of Fear
of Recurrence or Fatigue and PA.
Partner Fear of Recurrence
The final set of analyses focused on the partner’s own fear of recurrence, and if
his fear explained additional variance in survivor’s emotional adjustment. Results of a
repeated measures ANCOVA (Table 1) indicated that partner Fear of Recurrence did not
significantly change over time. In addition, survivors and partners did not report
significantly different levels of Fear of Recurrence at T1 or T2 (p’s >.29). Survivor and
partner ratings of fear were modestly, though significantly correlated (r’s = .19 and .23,
p’s = .02 and .005, for T1 and T2, respectively).
This study found partial support for the hypothesis that the partner’s own Fear of
Recurrence predicted additional variance in survivor emotional adjustment above that
predicted by the survivor’s Fear of Recurrence. The final results of a hierarchical linear
regression predicting T1 PA (Adj R
2
= .15, p<.001) indicated that MBC Intervention C (β
= .20, p=.03) and Relationship Satisfaction (β = .22, p=.004) positively predicted T1 PA,
and partner Fear of Recurrence negatively predicted T1 PA (β = -.21, p=.007). Survivor
Fear of Recurrence had been significant when entered in Block 2, but after the addition of
38

partner Fear of Recurrence, survivor Fear of Recurrence was no longer significant. T1
Partner Fear of Recurrence did not significantly predict T1 Depression or NA.
For the within T2 PA equation (Adj R
2
= .11, p=.001), living in Kansas or DC
positively predicted T2 PA (β = .20, p=.02; β = .17, p=.04, respectively), and survivor
Fear of Recurrence and partner Fear of Recurrence negatively predicted T2 PA (β = -.21,
p=.008; β = -.19, p=.02, respectively). T2 Partner Fear of Recurrence did not
significantly predict T2 Depression or NA.
For the analyses over time, a significant role for partner Fear of Recurrence was
seen when predicting T2 NA. In that final equation (Adj R
2
= .17, p<.001), living in
Kansas and partner T1 Fear of Recurrence were negatively associated with T2 NA (β = -
.21, p=.01; β = -.18, p=.02, respectively) and survivor T1 Fear of Recurrence was
positively associated with T2 NA (β = .29, p<.001). T1 Partner Fear of Recurrence did
not significantly predict T2 Depression or PA.
Chapter Two Discussion
This study examined dyadic perspectives of fear of recurrence and fatigue, and
associations between those perspectives and survivors’ mood during the transition
following treatment for breast cancer. The women in our study reported low levels of
fatigue during this period and did not endorse high levels of fear of recurrence. Average
fear of recurrence fell at the midpoint of the scale, which is labeled ―Neither agree or
disagree‖. This suggests that on average, survivors did not strongly agree or disagree
with feeling worried or preoccupied about their health or cancer. Despite relatively low
levels of symptoms, fear of recurrence and fatigue were associated with survivor’s
39

general mood during the months following treatment completion. As fatigue symptoms
increased, women reported more depressive symptoms and negative affect, and less
positive affect. Women with greater fear of recurrence also reported more depressive
symptoms and negative affect, though no association was seen between fear of recurrence
and positive affect. In addition to studying survivor adjustment, a major aim of this paper
was to examine partner understanding of survivor fear of recurrence and fatigue, and
whether partner understanding contributes to survivor adjustment.
Approximately two-thirds of partners were reasonably accurate when estimating
survivors’ fear of recurrence and fatigue symptoms. At the first time point (four months
following treatment completion), partners’ perceptions did not significantly differ from
survivors’ ratings of fatigue and fear of recurrence. However, within the next four
months the couples’ ratings diverged. Partners overestimated survivors’ fear of
recurrence and fatigue at the second time point. Survivors reported a significant decrease
in fear of recurrence, but partners’ estimates remained constant. This mismatch suggests
that the adjustment process for the survivor was ongoing and that her fear lessened, but
her partner did not recognize the change. This could be because fear of recurrence is an
internal, emotional experience without obvious clues for the partner to notice, and he may
have assumed that her fear had stabilized in the earlier months following completion of
treatment.
In addition to describing partner understanding of survivor’s symptoms, we tested
whether his perception contributed to survivors’ emotional adjustment. Here we failed to
find a main effect between partner perception of the survivor’s fear of recurrence or
40

fatigue and her adjustment, beyond that explained by her own rating. Given the modest
though significant correlations between survivor and partner perception ratings of fear of
recurrence and fatigue, the failure to predict was not due to multicollinearity. In
exploratory, post hoc analyses, the survivor’s ratings were removed from the equation,
leaving only the covariates and partner’s perception of fear of recurrence and fatigue as
the key predictors. Results showed that partner perception of fear of recurrence still did
not predict survivor emotional adjustment at any time point (with one exception for a
positive association with Depression within T2). However, partner perception of fatigue
significantly predicted Depression, PA and NA within T1, and predicted PA both over
time, and within T2. When the survivor’s own fatigue is not taken into account, the
partner’s understanding seems to act as a proxy for her ratings, and predicts her mood in
the same direction as her own ratings. It is puzzling that although he is equally accurate
in estimating her fatigue and fear, his fear estimate does not serve as a proxy for her fear
of recurrence.
We speculated that if partners’ perceptions of survivors’ symptoms had been
more divergent, we might have seen a greater contribution to the variance in her
adjustment. However, results of our overestimating and underestimating analyses failed
to support this idea. We did see a few within time associations between over- and
underestimating and positive affect. These results suggest that underestimating fatigue
was associated with greater positive affect within T1, even after controlling for the
survivor’s level of fatigue. In addition, overestimating fear of recurrence was associated
with less positive affect within T2, after controlling for her own fear of recurrence. Since
41

positive affect can reflect activity level and engagement, it is possible that his over- and
underestimation of her fear and fatigue was actually informed by his perception of her
activity level and engagement.
When we examined the partner’s own fear of recurrence, we found modest
correlations between partner and survivor fear (r=.19, .23). This is comparable to the .29
estimate found in a recent meta-analysis of distress in couples coping with cancer
(Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008). Within time, more fear of
recurrence in the partner was associated with less positive mood in the survivor. This is
notable because positive mood was the one outcome never predicted by the survivor’s
own fear of recurrence. Why would the partner’s fear be a stronger predictor than the
survivor’s fear of her positive mood? This could reflect one of our study limitations.
Our study only used heterosexual couples, and the categories of survivor and partner are
confounded by sex. Women tend to be stronger at identifying emotions than men (Brody
& Hall, 2010) and the survivors in our study may have perceived the stress or fear
expressed by their male partner. The partner’s fear seemed to have a dampening effect
on survivor’s engagement and positivity, but did not intensify her negative emotions.
Since positive and negative affect are orthogonal it is reasonable that his feelings were
differentially related to her positive and negative mood.
We found support for a moderating effect of partner perception on the association
between survivor fatigue and emotional adjustment. However, the results were the
opposite of what we expected. We hypothesized a buffering effect but the results were
suggestive of an exacerbation. That is, the poorest adjustment was seen among couples
42

in which both members rated the survivor as having high fatigue. This seems to reflect
dyadic agreement, but unfortunately, being in agreement did not help her mood; rather it
mirrored how poorly she felt. This could be due to inadequate support provided to
survivors with greater fatigue. Fatigue perceived and support provided by the partner
trended towards significance, but in a negative direction (r = -.14, p = .08), meaning he
provided less support as he thought her fatigue increased. This is the opposite direction
we would have hypothesized. Perhaps he thought he was unhelpful since she still
experienced high levels of fatigue, and so rated his support lower. Alternatively, he may
have decreased the support he provides out of frustration that it did not seem to alleviate
her fatigue.
Relatedly, one of the most surprising null results was that support provided by the
partner was never associated with survivor adjustment. This study used a unique measure
of support (Bolger et al., 1996) that assessed the frequency of support provided when
needed, rather than a strict quantity measure. Partners in this study reported providing
strong support most of the time and the variable had a restricted range. Moreover, in this
study, the high levels of support did not occur at random. Results of an attrition analysis
of this sample (Christie, Meyerowitz, Stanton, Rowland, & Ganz, unpublished
manuscript) found that survivors who felt less supported by their partner were less likely
to consent to him participating in this research. In addition, women with poorer
emotional quality of life were less likely to have partners participate. Thus, the current
sample represents women with stronger support and better emotional adjustment than the
43

population they were drawn from. Restrictions in these domains may have decreased the
likelihood of detecting an association between support and emotional adjustment.
In addition to previously mentioned limitations, (i.e. survivor and partner roles
confounded by sex, and a skewed sample in terms of support and demographic
characteristics), it is important to acknowledge other study limitations. Data relied on
self-report questionnaires which lack an objective perspective and can be influenced by
individual response styles and distortions. In addition, we did not specifically measure
dyadic communication about fatigue and fear of recurrence, which could have been
associated with the accuracy of the partner’s perceptions. Finally, mood is unlikely to be
as static as our results suggest. With only two time periods that were four months apart,
we were unable to capture fluctuations that can occur from week to week, or changes in
response to follow-up medical appointments. Using daily or weekly diary methods could
permit a closer examination of mood during this transition.
In summary, this study sought to answer two broad questions about the transition
time following treatment for breast cancer. First, do partners understand survivors’
experiences with salient post-treatment side effects? And second, does their
understanding matter to the survivor’s emotional adjustment? About two-thirds of
partners had reasonably accurate understanding, though understanding had limited value
in predicting the survivor’s mood. Interestingly, the partner’s understanding became less
accurate over time and it is unknown if this is a normal fluctuation, or a signal of
continuing differences in the perceptions of survivors and partners. Since this study
focused on a four month period within the first year following treatment completion, it is
44

unknown where this fits within the couple’s larger adjustment process. A longer term
study could measure dyadic understanding and adjustment as the couple continues to
move beyond the cancer experience. Given the importance of identifying survivors who
could benefit from an intervention, and the availability of evidence-based treatments for
fatigue (Mock, 2004), our findings suggest that querying survivors and partners about
fatigue during follow-up appointments could help identify women at greater risk of
having difficulty adjusting during this challenging transition time.

45

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50

Appendix 1. Consent Form Requesting Permission to Contact Partner

Excerpted from IRB Approved Consent to Participate in Research
FOR WOMEN WITH SPOUSES OR PARTNERS
We would like to contact your partner and request his or her participation, if you
consent to it and provide us with information on how to contact your partner.
However, it is not necessary that you allow us to contact your partner in order for you
to participate in the study. Your participation in the study is not contingent on your
partner’s participation. If you agree to allow us to contact your partner, we will
telephone him or her and request permission to send a survey that contains questions
about quality of life, adjustment, and well being, as well as items about symptoms of
depression and anxiety and about sexual functioning. Your partner would be free to
agree or decline to participate, and your partner’s participation will not affect your
participation in the study.
On the checklist below, you are asked to let us know if you are willing to allow us to
contact your partner and request his or her participation in the research.
Please initial the appropriate box below:
I agree to allow my partner to be contacted for participation in this research.
I do not want my partner to be contacted for participation in this research.

Excerpted from IRB Approved Consent to Participate in Research for Partners
You are asked to participate in a research study conducted by Patricia A. Ganz, M.D.,
from the University of California, Los Angeles. You have been asked to participate
in this study because you are a partner of a woman who has been diagnosed with
breast cancer and is participating in the Moving Beyond Cancer (MBC) research
study. Your participation in this study is entirely voluntary. You should read the
information below, and ask questions about anything you do not understand, before
deciding whether or not to participate.

51

Appendix 2. Chapter One Validated Study Measures
Marital Satisfaction (Revised Dyadic Adjustment Scale; Busby, Crane, Larson, &
Christensen, 1995).
Most people have disagreements in their relationships. Please indicate below the
approximate extent of agreement or disagreement between you and your partner for each
item on the following list. Items rated from 1 “Always Agree” to 6 “Always Disagree”.
1. Religious matters
2. Demonstrations of affections
3. Sex relations
4. Conventionality (correct or proper behavior)
5. Making major decisions
6. Career decisions
Items rated from 0 “All of the Time” to 5 “Never”
7. How often do you discuss or have you considered divorce, separation or
terminating your relationship?
8. Do you ever regret that you married or lived together?
9. How often do you and your partner quarrel?
10. How often do you and your partner ―get on each other’s nerves‖?
Item rated from 0 “Never” to 4 “Every day”
11. Do you and your partner engage in outside interests together?
How often would you say the following events occur between you and your partner?
Items rated from 0 “Never” to 5 “More than once a day”.
12. Have a stimulating exchange of ideas
13. Calmly discuss something
14. Work together on a project

Support from a Helpful Other (Bolger, Foster & Vinokur, 1996).
Think about all of the people who know about your diagnosis and treatment. Who
currently is the most helpful to you (e.g. spouse/partner, daughter, friend)? How much
does this person currently… Items were rated on 5-point Likert-type scales, ranging from
1 “Not at all” to 5 “A great deal”.
1. Provide you with encouragement and reassurance when you need it?
2. Show that s/he cares about you as a person?
52

3. Help you understand and sort things out when you are troubled by something?
4. Listen to you when you need to talk about things that are important to you?
5. Understand the way you think and feel about things?
6. Say things that raise your self-confidence?
7. Give you useful information or advice when you need it?
8. Provide you with direct help; that is, do things for you or give you things you
need?
Partner Provided Support was measured with the 8-item Bolger et al. (1996) scale.
Partners were instructed to Please answer the following questions regarding your
relationship with your partner. How much do you currently:
1. Provide her with encouragement and reassurance when she needs it?
2. Show that you care about her as a person
3. Help her understand and sort things out when she is troubled by something
4. Listen to her when she needs to talk about things that are important to her
5. Understand the way she thinks and feels about things.
6. Say things that raise her self-confidence
7. Give her useful information or advice when she needs it
8. Provide her with direct help; that is, do things for her or give her things she needs.

RAND SF-36 (Ware & Sherbourne, 1992) that form Physical Composite Scale
(PCS) and Mental Composite Scale (MCS). Each scale was scored from 0 to 100, with
100 being the maximum score.
1. In general, would you say your health is: (Poor to Excellent)
2. Compared to one year ago, how would you rate your health in general now?
(Much better to Much worse)
The following items are about activities you might do during a typical day. Does your
health now limit you in these activities? If so, how much? (Yes, limited a lot to No, not
limited at all).
1. Vigorous activities, such as running, lifting heavy objects, participating in
strenuous sports.
2. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling,
or playing golf.
3. Lifting or carrying groceries
4. Climbing several flights of stairs
5. Climbing one flight of stairs
6. Bending, kneeling, or stooping
7. Walking more than a mile
53

8. Walking several blocks
9. Walking one block
10. Bathing or dressing yourself

During the past 4 weeks, have you had any of the following problems with your work or
other regular daily activities as a result of your physical health?
11. Cut down on the amount of time you spent on work or other activities
12. Accomplished less than you would like
13. Were limited in the kind of work or other activities you did
14. Had difficulty performing work or other activities (for example, it took extra
time)

During the past 4 weeks, have you had any of the following problems with your work or
other regular daily activities as a result of any emotional problems (such as feeling
depressed or anxious)?
15. Cut down on the amount of time you spent on work or other activities
16. Accomplished less than you would like
17. Didn’t do work or other activities as carefully as usual
18. During the past 4 weeks, to what extent has your physical health or emotional
problems interfered with your normal social activities with family, friends,
neighbors, or groups?
19. How much bodily pain have you had during the past 4 weeks?
20. During the past 4 weeks, how much did pain interfere with your normal work
(including both work outside the home and housework)?

These questions are about how you feel and how things have been with you during the
past 4 weeks. For each question, please give the one answer that comes closest to the
way you have been feeling.
21. Did you feel full of pep?
22. Have you been a very nervous person?
23. Have you felt so down in the dumps nothing could cheer you up?
24. Have you felt calm and peaceful?
25. Did you have a lot of energy?
26. Have you felt downhearted and blue?
27. Did you feel worn out?
28. Have you been a happy person?
54

29. Did you feel tired?
30. During the past 4 weeks, how much of the time has your physical health or
emotional problems interfered with your social activities (like visiting friends,
relatives, etc.)?
31. I seem to get sick a little easier than other people
32. I am as healthy as anybody I know
33. I expect my health to get worse
34. My health is excellent

Positive and Negative Affect Scale (PANAS) (Watson, Clark, & Tellegen, 1988)
This scale consists of a number of words that describe different feelings and emotions.
Read each item and then mark the appropriate answer in the space next to that word.
Indicate to what extent you have felt this way during the past four weeks. Items rated
from 1 “Very slightly or not at all” to 5 “Extremely”.
1. Interested
2. Distressed
3. Excited
4. Upset
5. Strong
6. Guilty
7. Scared
8. Hostile
9. Enthusiastic
10. Proud
11. Irritable
12. Alert
13. Ashamed
14. Inspired
15. Nervous
16. Determined
17. Attentive
18. Jittery
19. Active
20. Afraid

1

Appendix 3. Correlations among Survivor Predictors of Consent and Partner Participation (n=384)

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15
1. Income -

2. Age -.20
*
-

3. Ethnicity .09 .06 -

4. Employed .07 -.33
*
.04 -

5. Education .35
*
-.01 .05 .09 -

6. Hormonal Treatment .02 .17
*
-.02 .01 .00 -

7. Mastectomy -.02 -.11* -.04 -.06 -.03 -.08 -

8. Chemotherapy .14
*
-.35
*
-.01 .06 .04 -.14
*
.14
*
-

9. Years in Relationship -.13
*
.63
*
.04 -.29
*
-.11
*
.13
*
-.08 -.26
*
-

10. Relationship
Satisfaction .10 .19
*
.08 -.12
*
.11
*
.10 .04 .00 .09 -

11. Partner Support .10
*
.00 .04 -.07 .06 .08 .00 .02 .00 .51
*
-

12. Support from
Helpful Other .08 .09 .04 -.14
*
.02 .05 .08 .05 .01 .69
*
.64
*
-

13. Physical Composite
Scale .17
*
-.05 .01 .10 .07 -.06 -.20
*
-.07 -.03 .03 .02 .04 -

14. Mental Composite
Scale -.01 .26
*
-.05 -.10
*
.01 .03 -.03 -.05 .21
*
.37
*
.09 .26
*
-.04 -

15. Positive Affect .06 .13
*
.05 -.02 .06 .02 -.07 -.06 .06 .35
*
.21
*
.37
*
.26
*
.58
*
-
16. Negative Affect .02 -.25
*
.10 .08 .00 -.05 .06 .05 -.24
*
-.28
*
-.07 -.14
*
-.04 -.62
*
-.33
*

*p<.05

55
56

Appendix 4. Chapter Two Validated Study Measures

Marital Satisfaction (Revised Dyadic Adjustment Scale; Busby, Crane, Larson, &
Christensen, 1995).

Most people have disagreements in their relationships. Please indicate below the
approximate extent of agreement or disagreement between you and your partner for each
item on the following list. Items rated from 1 “Always Agree” to 6 “Always Disagree”.
1. Religious matters
2. Demonstrations of affections
3. Sex relations
4. Conventionality (correct or proper behavior)
5. Making major decisions
6. Career decisions

Items rated from 0 “All of the Time” to 5 “Never”

7. How often do you discuss or have you considered divorce, separation or
terminating your relationship?
8. Do you ever regret that you married or lived together?
9. How often do you and your partner quarrel?
10. How often do you and your partner ―get on each other’s nerves‖?

Item rated from 0 “Never” to 4 “Every day”

11. Do you and your partner engage in outside interests together?

How often would you say the following events occur between you and your partner?
Items rated from 0 “Never” to 5 “More than once a day”.

12. Have a stimulating exchange of ideas
13. Calmly discuss something
14. Work together on a project

Fear of Recurrence (Northouse, 1981).

Please respond to the following questions by indicating the number that best reflects
your degree of agreement with the statement. Items were answered on a scale from 1
“Strongly Disagree” to 5 “Strongly Agree”.

Survivor Self-Report
1. I would like to feel more certain about my health.
2. I worry that my cancer will return.
3. I am preoccupied with thoughts of the cancer returning.
57

Partner Perception of Survivor
1. My partner would like to feel more certain about her health.
2. My partner worries that her cancer will return.
3. My partner is preoccupied with thoughts of the cancer returning.

Partner Self-Report
1. I would like to feel more certain about her health.
2. I worry that her cancer will return.
3. I am preoccupied with thoughts of her cancer returning.

Fatigue (Hann et al., 1998).
For each of the following, circle one number that best indicates how that item applies to
you. Scale ranged from 0 “Not at all fatigued/No interference” to 10 “As fatigued as I
could be/Extreme interference”.

Survivor Self-Report
1. Rate your level of fatigue on the average during the past week.
2. Rate how much in the past week, fatigue interfered with your general level of
activity.
3. Rate how much in the past week, fatigue interfered with your ability to
concentrate.
4. Rate how much in the past week, fatigue interfered with your relations with other
people.
5. Rate how much in the past week, fatigue interfered with your mood.

Partner Perception of Survivor
1. Rate your partner’s level of fatigue on average during last week.
2. Rate how much in the past week, fatigue interfered with her general level of
activity.
3. Rate how much in the past week, fatigue interfered with her ability to concentrate.
4. Rate how much in the past week, fatigue interfered with her relations with other
people
5. Rate how much in the past week, fatigue interfered with her mood

Partner Provided Support (Bolger, Foster & Vinokur, 1996).
Partners were instructed to Please answer the following questions regarding your
relationship with your partner. How much do you currently:
Items were rated on 5-point Likert-type scales, ranging from 1 “Not at all” to 5 “A great
deal”.

1. Provide her with encouragement and reassurance when she needs it?
2. Show that you care about her as a person
3. Help her understand and sort things out when she is troubled by something
58

4. Listen to her when she needs to talk about things that are important to her
5. Understand the way she thinks and feels about things.
6. Say things that raise her self-confidence
7. Give her useful information or advice when she needs it
8. Provide her with direct help; that is, do things for her or give her things she needs.

Positive and Negative Affect Scale (PANAS) (Watson, Clark, & Tellegen, 1988)

This scale consists of a number of words that describe different feelings and emotions.
Read each item and then mark the appropriate answer in the space next to that word.
Indicate to what extent you have felt this way during the past four weeks. Items rated
from 1 “Very slightly or not at all” to 5 “Extremely”.
1. Interested
2. Distressed
3. Excited
4. Upset
5. Strong
6. Guilty
7. Scared
8. Hostile
9. Enthusiastic
10. Proud
11. Irritable
12. Alert
13. Ashamed
14. Inspired
15. Nervous
16. Determined
17. Attentive
18. Jittery
19. Active
20. Afraid

59

Depression (modified CES-D; Radloff, 1977)
Below is a list of feelings, attitudes, and behaviors that you may have experienced during
the past week. Please use the following scale and circle the one response that best
describes how often you have had these experiences during the past week. Rarely or
none of the time = less than one day; Some or a little of the time = 1 or 2 days;
Moderately = 3 or 4 days; Most of the time = 5 to 7 days.

1.I felt that I could not shake off the blues even with help from family and friends
2.I felt that I was just as good as other people
3.I had trouble keeping my mind on what I was doing
4.I felt depressed (blue or down)
5.I felt hopeful about the future.
6.I thought my life had been a failure
7.I felt fearful
8.I was happy
9.I talked less than usual
10. I felt lonely
11. People were unfriendly
12. I enjoyed life
13. I had crying spells
14. I felt sad
15. I felt that people disliked me

60

Appendix 5. Correlation Matrix for Survivor and Partner Key Variables
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17
1. T1 Survivor Fear -

2. T2 Survivor Fear .69
*
-

3. T1 Survivor
Fatigue .34
*
.30
*
-

4. T2 Survivor
Fatigue .18
*
.22
*
.53
*
-

5. T1 Partner
provided Support .05 .11 -.15 -.11 -

6. T2 Partner
provided Support .00 .04 -.15 -.15 .76
*
-

7. T1 Fear- Partner
perception .42
*
.29
*
.18
*
.06 .04 .02 -

8. T2 Fear - Partner
perception .44
*
.37
*
.24
*
.17
*
.03 -.01 .71
*
-

9. T1 Fatigue-
Partner perception .07 .06 .34
*
.24
*
-.14 -.12 .41
*
.27
*
-

10. T2 Fatigue -
Partner perc .06 .12 .24
*
.46
*
-.04 -.16
*
.26
*
.28
*
.52
*
-

11. T1 Partner Fear .19
*
.13 .08 .01 .13 .09 .63
*
.46
*
.30
*
.17
*
-

12. T2 Partner Fear .31
*
.23
*
.18
*
.15 .13 .08 .49
*
.52
*
.26
*
.28
*
.72
*
-

13. T1 Survivor
Depression .36
*
.25
*
.52
*
.25
*
-.16
*
-.10 .27
*
.34
*
.31
*
.09 .19
*
.22
*
-

14. T1 Survivor Neg
Affect .42
*
.26
*
.43
*
.22
*
-.13 -.06 .23
*
.28
*
.28
*
.10 .11 .13 .62
*
-

15. T1 Survivor Pos
Affect -.17
*
-.16 -.44
*
-.21
*
.00 -.01 -.24
*
-.26
*
-.31
*
-.07 -.26
*
-.30
*
-.68
*
-.36
*
-

16. T2 Survivor
Depression .27
*
.36
*
.36
*
.49
*
-.09 -.04 .09 .23
*
.14 .18
*
.08 .20
*
.48
*
.31
*
-.33
*
-

17. T2 Survivor Neg
Affect .29
*
.34
*
.32
*
.40
*
-.12 -.07 .05 .12 .17
*
.15 -.07 .01 .30
*
.51
*
-.09 .69
*
-
18. T2 Survivor Pos
Affect -.18
*
-.26
*
-.29
*
-.48
*
-.02 .01 -.09 -.19
*
-.23
*
-.30
*
-.15 -.25
*
-.36
*
-.13 .61
*
-.64
*
-.31
*

*p < .05

60

Abstract (if available)

Abstract The majority of studies about adjustment to cancer focus only on the perspectives of the individual with cancer, and overlook the contributions made by those in the survivor’s social network. This dissertation examines post-treatment adjustment of breast cancer survivors and contributions to adjustment from survivors’ male partners. It is presented as two manuscripts. Both studies derive from the Moving Beyond Cancer (MBC) intervention study and a second study of the male partners of the MBC participants. ❧ The first study (Chapter 1) addresses methodological limitations common in research on couples, namely, low rates of participation, and a lack of understanding about how representative couples are of the larger population. This study examined demographic, treatment, relationship and quality of life characteristics associated with recruitment and retention of partners of breast cancer survivors from the MBC intervention study. Of 384 partnered survivors who participated in the MBC intervention study, 280 provided consent for their partners to be contacted, 193 partners completed the initial study questionnaire, and 164 partners completed both study questionnaires. Backward stepwise logistic regression indicated that greater family income, and support from a partner or helpful other increased the likelihood that the survivor would consent to have her partner contacted (χ2 = 56.93, p<.001). Greater family income, better survivor physical and emotional quality of life, and non-Hispanic White ethnicity increased the likelihood of partner participation (χ2 = 30.30, p<.001). The model predicting partner retention from the first to second questionnaire was non-significant (χ2 = 30.30, p<.001). The results indicate that ethnic minorities and individuals with lower SES and poorer physical and mental quality of life are less likely to be included in psycho-oncology couple’s research. ❧ The second study (Chapter 2) examines emotional adjustment following breast cancer treatment from a couples’ perspective. In this longitudinal study of 153 couples, I examined partner understanding of fatigue and fear of recurrence among breast cancer survivors during the post-treatment period, and if partner understanding contributed to survivor emotional adjustment. Partner’s perception of survivor’s fatigue and fear of recurrence did not significantly differ from the survivor’s own rating four months post-treatment (T1), but by eight months post-treatment (T2), partners perceived survivors to have significantly greater fatigue and fear of recurrence than the survivors reported. An interaction effect was found at T1 such that among survivors with low levels of fatigue, partner perception of fatigue was not associated with survivor emotional adjustment. However, for survivors with high levels of fatigue, survivors whose partners perceived them to have high fatigue had worse emotional adjustment than survivors whose partners rated them low on fatigue. Partner under- and overestimation of survivor fear and fatigue were associated with survivor positive affect. Finally, the study also examined partner’s own fear of recurrence. Average partner fear of recurrence remained constant over time, and was associated with less positive affect in the survivor within T1 and T2. Results suggest that while the partner’s perspective of the survivor’s symptoms makes a limited contribution to survivor adjustment, his own fear is detrimental to her positive mood.

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Asset Metadata

Creator Christie, Kysa Marie (author)

Core Title Partners of breast cancer survivors: Research participation and understanding of survivors' concerns

School College of Letters, Arts and Sciences

Degree Doctor of Philosophy

Degree Program Psychology

Degree Conferral Date 2011-12

Publication Date 10/18/2011

Defense Date 09/07/2011

Publisher Los Angeles, California (original), University of Southern California (original), University of Southern California. Libraries (digital)

Tag breast cancer,fatigue,fear of recurrence,OAI-PMH Harvest,Partners,psychosocial adjustment

Format theses (aat)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Meyerowitz, Beth E. (committee chair), Aranda, Maria P. (committee member), John, Richard S. (committee member), Margolin, Gayla (committee member)

Creator Email kysachristie@hotmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC1405532

Unique identifier UC1405532

Identifier etd-ChristieKy-350.pdf (filename)

Legacy Identifier etd-ChristieKy-350

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Format theses (aat)

Rights Christie, Kysa Marie

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