Breast Cancer Survivorship: Partner's Role in Recovery

Institution: University of Southern California
Investigator(s): Beth Meyerowitz, Ph.D. -
Award Cycle: 1999 (Cycle V) Grant #: 5PB-0172 Award: $610,760
Award Type: Request for Applications
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

Initial Award Abstract (1999)
The transition from being a patient on active treatment to long-term follow-up and survivorship can be upsetting and disruptive for women with breast cancer. Women are frequently unprepared for the lengthy recovery period that can be required. Uncertainty about what to expect post-treatment, what kind of follow-up is typical, and which symptoms are important to monitor leaves many women feeling both relief at having completed treatment and heightened anxiety about the future. Unfortunately, support from intimate partners can often be lacking at this stressful time because partners often expect that their loved one will quickly return to "normal" both physically and emotionally. Thus, they may be neither prepared for, nor understanding of, the ongoing stresses to the patients or to themselves, potentially leading to distress and maladaptive coping for both patient and partner.

In this project, we will investigate how partners' reactions during this transition period relate to patients' quality of life, relationship adjustment, personal growth, and coping. We propose to examine these issues by mailing surveys to approximately 370 partners of breast cancer patients who have recently completed their primary and adjuvant treatment for early stage breast cancer. We will ask partners to complete the surveys twice, once approximately 4 months after the patient finishes treatment and again 4 months later. Questionnaire packets will include standardized measures of multiple quality of life domains (emotional, cognitive, physical), relationship and sexual adjustment, coping and support, and breast cancer-related perceptions. Partners will be recruited through patients who are participating in a large, multi-site study of the period of transition to survivorship that has recently received funding from the National Cancer Institute.

The proposed project is designed to take advantage of the resources for patient recruitment and data collection available through that grant, requiring additional funds only to collect and analyze data from partners (for which the NCI grant provides no funding). We will coordinate data collected from the 2 projects to allow us to provide a comprehensive assessment of couples' adjustment and coping. In the NCI study, we also will develop and evaluate a brief videotape intervention designed to prepare women for the transition from treatment to survivorship, allowing us to examine the impact of the videotape on partners, as well. We believe that the videotape will help partners to understand the difficulties facing patients at the completion of treatment, making them more likely to be able to provide helpful support. These findings will provide direct information on reducing the human costs of cancer for both the patient and her partner.

Final Report (2005)
The goal of this study was to provide a comprehensive assessment of quality of life and coping among partners of women who had recently completed treatment for breast cancer. The transition from being a patient on active treatment to long-term survival can be upsetting and disruptive for women with breast cancer. Understanding from intimate partners can be lacking at this essential time because partners may be unprepared for the ongoing stresses to the patient or to themselves, potentially leading to distress and maladaptive coping for patient and partner. We gathered questionnaire data from partners at 2 months and, again, at 6 months following the patientís completion of primary treatment for early-stage breast cancer. Questionnaire packets provided a comprehensive, multidimensional assessment of quality of life and coping using standardized instruments. We also asked partners to estimate the patientís level of physical symptoms and fatigue and her fear of recurrence. Partners were recruited through patients who participated in a large, multi-site study of the period of transition to survivorship funded by the National Cancer Institute.

Two hundred partners participated in the study (52.4% of those eligible). Patients whose partners participated were more likely to be non-Hispanic Whites, to have annual incomes greater than $60,000, to have better general health, to report more social support, and to use less avoidance coping. The ways in which participants differed from non-participants depended on whether the patient was deciding the partnerís research involvement or the partner was determining his or her own willingness to participate. Partners in the final sample had a mean age of 55.8 years and had been in the relationship with the patient for 26.1 years on average. Most were non-Hispanic Whites (94%), male (96.5%), and employed outside the home (70.5%).

A comparison of partnersí responses on standardized measures to normative data indicated good adjustment overall. Partners reported good quality of life, positive mood, good marital adjustment, low fear of cancer recurrence, low cancer-specific stress, and moderate levels of optimism. Levels of negative mood were somewhat higher than questionnaire norms and post-traumatic growth was low. There were no significant differences in quality of life or coping between the two time points. Partnersíquality of life did differ based on the medical treatment received by the patient. At the second time point, partners of mastectomy patients reported worse social functioning, more physical role limitations, more pain, more negative mood, higher fear of recurrence, and worse cancer-related hyperarousal/stress than partners of segmental surgery patients. Partners of women who received chemotherapy reported worse overall quality of life and higher fear of recurrence at the first time point.

We conducted paired t-tests to determine whether there were significant differences between patient and partner quality of life and coping. Partnersí reports were higher than patientsí on the physical components of quality of life at both time points, but there were no differences on emotional aspects of quality of life, dyadic adjustment, or cancer-related stress. Partners described less use of virtually every coping strategy as compared to patients. These differences were highly significant on subscales assessing seeking social support, avoidant coping, and problem-focused coping.

Partnerís perceptions of the patientís experience were not accurate for the most part. At the first time point, partners perceived patientsí fatigue to be significantly higher than what the patient had reported, but rated patientsí experience of physical symptoms to be lower than patientsí reports. In addition, patientsí reports of their levels of fear of recurrence were significantly lower at both time points than their partnersí estimates of their fear.

This study is the largest to provide a comprehensive, multidimensional assessment of partners of breast cancer survivors. The results suggest areas in which patients may feel misunderstood by their partners and indicate areas for future intervention. In addition, the findings provide some insight into which partners might have the greatest difficulty adjusting.

Symposium Abstract (2003)
Partners are often deeply and uniquely involved in their mateís breast cancer experience. This study examines the quality of life of partners of early-stage breast cancer survivors following treatment. The studyís unique design provides insight into the characteristics that distinguish survivors whose partners do or do not participate. Partners were recruited from coupled survivors enrolled in a survivor-focused study. Each of these survivors had already completed a comprehensive baseline questionnaire at the time of partner recruitment. Therefore, whether or not the partner ultimately participated, survivor data were available to understand differences between women whose partners did or did not participate. There were 393 partnered survivors in the initial sample and of these, 384 were eligible for the partner study. Of these 384 eligible partners, 52% (n=200) successfully completed participation. Twenty-five percent (n=97) were non-participants because the survivor refused consent to contact the partner, the first step in this studyís recruitment. Odds ratios from logistic regression show that survivors who reported income lower than $60,000, no current sexual activity, weaker social support from their partners, and less coping through emotional expression were less likely to grant consent to researchers to contact their partners. At the next step, 22% (n=85) of partners then actively refused participation themselves or passively refused by failing to return the questionnaire within an eight-week time period.

Logistic regression results show that partners who refused participation were in relationships with survivors who were more likely to be non-White and more likely to engage in avoidance coping. Additionally, these survivors were more likely to have lower general health but to be experiencing fewer sexual problems. The remaining 1% (n=2) of partners became ineligible because the survivor dropped out of her study or the relationship ended.

In summary, odds ratios from logistic regression show that final participants in this study (vs. all nonparticipants) were linked to survivors who were more likely to be White, have higher income, refrain from avoidance coping, experience better social support from their partners, have better general health and more sexual problems. These findings provide evidence of different patterns of possible biases in partner recruitment that is inaccessible in most studies.