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Journal of Clinical Oncology, Vol 25, No 11 (April 10), 2007: pp. 1403-1411 © 2007 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.07.5705 Late Effects of Cancer and Hematopoietic Stem-Cell Transplantation on Spouses or Partners Compared With Survivors and Survivor-Matched Controls
From the Department of Medicine, University of Florida College of Medicine, Gainesville, FL; Center on Outcomes, Research and Education at Evanston Northwestern Healthcare, Evanston, IL; University of Kentucky College of Medicine, Lexington, KY; Independent Consultant, Trout Creek, MI; and Center for International Blood and Marrow Transplant Research, Health Policy Institute, Medical College of Wisconsin, Milwaukee, WI Address reprint requests to Michelle M. Bishop, PhD, University of Florida, Department of Medicine, Box 100277, Gainesville, FL 32610-0277; e-mail: bishomm{at}medicine.ufl.edu
Purpose Little is known about the long-term effects of cancer and hematopoietic stem-cell transplantation (HCT) on spouses or partners. The purpose of this study was to examine the health-related quality of life and post-traumatic growth (PTG) of spouses/partners compared with survivors and controls and to identify factors associated with those outcomes. Patients and Methods HCT survivor/partner pairs (n = 177), coupled continuously since HCT, were drawn from 40 North American transplantation centers. Married peer-nominated acquaintances (of survivors) served as controls (n = 133). Outcomes were measured a mean of 6.7 years after HCT (range, 1.9 to 19.4 years). Results As expected, self-reported partner physical health was similar to controls and better than survivors (P < .001). However, partners reported more fatigue and cognitive dysfunction than controls (P < .001 for both), although less than survivors. Partners and survivors reported more depressive symptoms and sleep and sexual problems than controls (P < .001, P < .01, and P < .01, respectively). Odds of partner depression were nearly 3.5 times that of controls (P < .002). Depressed partners were less likely than depressed survivors to receive mental health treatment (P < .04). Partners reported less social support (P < .001), dyadic satisfaction (P < .05), and spiritual well-being (P < .05) and more loneliness (P < .05) than both survivors and controls. In contrast to survivors, partners reported little PTG (P < .001). Factors associated with partner outcomes included partner health problems, coping, female sex, social constraint, survivor depression, optimism, multiple life changes, and social support. Conclusion Spouses/partners experience similar emotional and greater social long-term costs of cancer and HCT than survivors without the potential compensatory benefits of PTG. Some of the factors associated with partner outcomes are amenable to intervention.
Spouses or partners of cancer patients must survive the challenges of cancer alongside the cancer patient survivor. Partners experience anxiety, distress, and depression at levels equal to1 or higher2,3 than their ill spouses in response to the cancer experience. Cancer survivors are increasingly dependent on their partners for physical and emotional care because patients are discharged home quicker and sicker.4 Partners play a pivotal role in providing support to the cancer survivor,5 which is critical for successful coping and adjustment6,7 and even survival.8 However, little is known about the long-term effects of cancer and treatments, such as hematopoietic stem-cell transplantation (HCT), on the quality of life (QOL) of partners of cancer survivors, especially after acute caregiving has ended. Most of the family/caregiver literature is focused on life states of progressive deterioration culminating in death (eg, the elderly or those with terminal cancer or dementia) and not on chronically stressful but stable conditions. Those studies indicate that female sex, younger age, and lower socioeconomic status,9 care-recipient physical and/or mental health dysfunction,10,11 and other life stressors12,13 can contribute to family/caregiver strain, whereas spouse optimism,14 social and emotional support,13,14 and quality of the marital relationship15 contribute to positive outcomes (see review in Nijboer et al16). It is unknown whether similar variables would predict QOL outcomes of partners of long-term survivors. Cancer is increasingly experienced as a chronic disease, and information about its very late effects on the family is important. This study compared the QOL, dyadic/marital adjustment, and personal growth of partners of long-term cancer/HCT survivors to that of the survivors and controls and identified characteristics associated with these outcomes. We hypothesized that partners would report similar physical health and functioning compared with controls, which would be better than survivors; that partners would report poorer emotional well-being than controls, but better than survivors; and that partners would report poorer social functioning than controls, but better than survivors.
These data are from a large multisite study of the long-term QOL of cancer/HCT survivors compared with a subset of matched peer-nominated controls. Results describing the QOL of the survivors compared with controls were previously described,17 as were details regarding survivor characteristics, study procedures, and institutional review board approval.17 This report focuses on the experiences of the spouses/partners (terms used interchangeably) compared with the survivors to whom they were married and with married controls. Partners, identified through survivor interviews, needed to have been in a continuous relationship with the survivor since transplantation. Controls were survivor acquaintances with no history of cancer/HCT and no involvement in providing care to the survivor.
Study Measures Demographic and background information. Information included age, race, marital and occupational status, education, annual household income, number of dependents, partner health problems, psychosocial service use, and life changes attributed to the cancer experience, including the decision not to have children, loss of educational opportunity, loss of employment opportunity, change in job plans, problems in health insurance, lack of ability to work or study at former pace, and lack of desire to get ahead in work or school. Physical functioning and well-being. Measures included the General Health and Physical Functioning subscales of the Medical Outcomes Study (MOS) 36-Item Short Form Health Survey.18 Fatigue, sexual problems, and sleep difficulties were assessed using the Functional Assessment of Chronic Illness Therapy–Fatigue Scale19 and the MOS Sexual Problems20 and Sleep Problems21 scales, respectively. The Alertness Behavior subscale of the Sickness Impact Profile22,23 assessed cognitive dysfunction.
Psychological adjustment.
Measures of psychological adjustment included the Mental Health Index of the MOS 36-Item Short Form Health Survey18 and the Center for Epidemiologic Studies Depression Scale (CES-D).24 The CES-D yields a total score and a dichotomous index of likely cases of clinically significant depressive symptoms based on a cutoff score of Social functioning. Social functioning was measured by the Social Functioning subscale of the MOS 36-Item Short Form Health Survey,18 the MOS Satisfaction With Family Functioning Measure,28 the University of California, Los Angeles Loneliness Scale,29 and the Duke-University of North Carolina Social Support Questionnaire.30 Social constraint, the degree to which one feels inhibited by others to express thoughts and feelings, was measured in survivors and partners using the Social Constraint Scale.31,32 We assessed social constraint from one's partner at the time of HCT and currently. The Dyadic Adjustment Scale33 is a measure of adjustment in committed relationships. Respondents scoring less than 100 are classified as maritally distressed.3,34 We included the total score as well as one (of four) subscale score, Dyadic Satisfaction.3 Spiritual well-being. The Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale35 was used to measure spiritual well-being. PTG. The Posttraumatic Growth Inventory (PTGI)36 assesses growth or benefits experienced after a specific event. For the partner group, the PTGI was keyed to "as a result of having a spouse/partner who had cancer or cancer treatment such as a blood or marrow transplant." As in previous research regarding positive change after cancer,17,37,38 controls completed the PTGI anchored to change occurring over the same span of time as their matched counterpart. Optimism. Optimism was measured by the Life Orientation Test.39 Coping. Coping style was measured using the Brief Coping With Problems Experienced Scale.40 A factor analysis of the 15 coping subscales was conducted to reduce the number of coping dimensions to three,41 which were active coping, maladaptive coping, and positive coping. Functional status of survivor. Karnofsky performance status42 was completed by a health care provider within 3 months of the study interview.
Statistical Analyses
Four hundred forty-three survivors (of 483 married/partnered survivors) indicated they had been with the same partner since transplantation, and 338 survivors provided partner contact information. Two hundred forty-five partners were invited to participate; 183 returned a signed consent form (75% accrual, compared with 73% for survivors and 90% for controls17), and 182 completed questionnaires (99.5% retention; Fig 1). There was less than 2% missing data for nearly all questionnaires. Table 1 lists characteristics of the three groups. Partner-survivor relationships averaged 23.2 years (standard deviation [SD], 10.4 years; range, 2 to 51 years). There were no differences between partners and controls in percentage of life changes reported except for change in job plans (23% of partners v 41% of controls responded affirmatively; P < .05).
Comparison of Partner, Survivor, and Control Groups Results of the group comparisons are listed in Table 2. Female partners were more likely than male partners to report poor mental health, depressive symptoms, poor social functioning, sexual problems, cognitive dysfunction, and social constraint (all significant at P < .01 or better). However, female partners were more likely than male partners to report PTG (P < .001) and social support (P < .01). Although sex differences were evident, results of group comparisons remained the same whether or not sex was held constant.
Partners reported similar general heath compared with controls but better general health compared with survivors. However, like survivors, partners reported more sleep and sexual problems than controls. Partners also reported worse fatigue and cognitive dysfunction than controls, although this difference was less than that between survivors and controls.
Partners and survivors reported similar impairments in general mental health and depressive symptoms, which were worse than controls. The proportion of clinically significant cases of depression (score of
There was no difference in mean scores of cancer/HCT-related distress levels between partners (mean score, 10.2; SD, 12.6) and survivors (mean score, 12.6; SD, 13.8) as measured by the IES (P > .2). The proportion of participants with medium (scores between 9 and 19) and high distress (scores  20) was similar between partners (20% and 27%, respectively) and survivors (21% and 23%, respectively; P > .2), with no sex difference in either group (P > .2). Partners reported lower social support, higher loneliness, and less dyadic satisfaction than both survivors and controls. Nineteen percent of couples and 9% of controls reported marital distress (Dyadic Adjustment Scale score < 100). More male than female partners reported marital distress (27% v 11%, respectively) in contrast to fewer male than female survivors (6% v 22%, respectively) and fewer male than female controls (3% v 12%, respectively). Partners reported more social constraint at the time of HCT but less social constraint at the present time than survivors. Partners also reported less spiritual well-being than both survivors and controls and substantially lower levels of PTG than survivors. Partner PTG levels were identical to those of controls (Table 2).
Factors Associated With Partner Outcomes
This is the first study to examine the long-term impact of cancer and treatment on the QOL of partners of HCT recipients, the first to include a comparison group of participants unaffected by HCT, and the first to examine spiritual well-being and PTG in long-term partners. Results provide evidence that the experience of cancer/HCT can have a long-standing (mean of 7 years after HCT) and wide-ranging (all QOL domains affected to varying degrees) impact on the partners of cancer/HCT survivors. Although, as hypothesized, partners were better off than survivors in overall physical functioning, they reported higher levels of fatigue and cognitive dysfunction than controls and showed similar levels of impairment to survivors in sleep and sexual functioning. Not surprisingly, fatigue, cognitive dysfunction, depressive symptoms, and sleep problems were found to be interrelated (data not shown). These deficits, reported years after the active caregiving stage was over, add to a growing body of evidence that indicates that the chronic strain of caregiving and other life changes secondary to cancer and its treatment can have physical health consequences for family caregivers,16 even after the active caregiving has ended.44
Contrary to our hypotheses, partners showed equal (not intermediate) levels of mental health impairment to survivors compared with controls. Partners also reported levels of cancer/HCT-related distress similar to that of survivors, with 27% of partners reporting elevated distress, which is consistent with what others have found.27 Interestingly, although we found more females reporting depression in the partner group, there was no sex difference for partners or survivors who reported elevated distress (score Contrary to expectations, partners were worse off than survivors (and controls) in several subdomains of social QOL, spiritual well-being, and PTG. Although others have shown that partners can experience more distress than ill patients,2,3 this is the first study to show that partners show poorer outcomes than survivors, particularly in social QOL, and may not benefit from the potential buffering effect of growth. Although partners reporting less growth than survivors is consistent with other studies,45 these partners reported no more growth than controls. In addition, although couple marital adjustment and satisfaction were comparable to other studies,3 the percentage of maritally distressed couples in our sample (19%) exceeded that found in cancer/HCT couples in the first year after HCT (11%).3 More male than female caregivers in our sample reported marital distress (27% v 11%, respectively), whereas Langer et al3 found the contrary (7% of males v 14% of females reported marital distress). A long-term longitudinal study of marital distress is necessary to understand these discrepant findings. Although we found several group differences, the magnitude of some of these differences was small. Our previous work and that of others46,47 evaluating the clinical significance of group difference scores in QOL has suggested that an effect size index smaller than 0.33 (one third of an SD) is not likely clinically meaningful. The effect sizes in this study for partner differences in outcomes (compared with controls and survivors) were in the 0.20 to 0.40 range. Nonetheless, three partner outcomes (depressive symptoms, low social support, and low PTG) were both significant and clinically meaningful. As noted earlier, most studies of cancer partners/caregivers have focused on survivors with advanced or terminal cancer and not long-term survivorship. Our data regarding spouse/caregiver mental health are consistent with the long-term disturbances in caregivers of heart transplantation recipients48 and stable stroke patients.49 Of particular note is our finding that, although a significant proportion of partners reported clinically significant levels of depressive symptoms, they were less likely than depressed survivors to be receiving mental health services, suggesting that spouses/caregivers may neglect their own needs50; this emphasizes an important unmet need that should be scrutinized in future studies targeted at intervention efforts. Female partners and those experiencing health problems themselves as well as multiple life changes as a result of the survivors' cancer/HCT experience were particularly vulnerable to poorer outcomes. Survivor depression predicted poorer partner QOL, whereas survivor functional status, presence of dependents in the home, and number of years since transplantation were not associated with partner QOL outcomes. Dyadic factors (such as social constraint and discordance between partner/survivor PTG scores) also were related to poorer partner QOL. A number of the factors associated with partner outcomes are amenable to prevention and intervention efforts (coping, social support, survivor depression, and even optimism51). The study's cross-sectional design limits our ability to draw inferences about the temporal trajectory of post-cancer/HCT partner outcomes. Changes in partner QOL may occur early during treatment/recovery and then plateau or may occur later in the extended recovery phase, as perhaps realization of permanent family and life changes takes place or as guilt or anger experienced earlier in the process goes unresolved. Determining the temporal trajectory is critical for a better understanding of dyadic long-term adjustment to cancer and of the optimal time to intervene. Longitudinal studies should observe couples whose relationship survives as well as couples whose relationship succumbs to cancer/HCT-related stressors. It is possible that our spouses were not representative of all cancer/HCT long-term partners; they had to have been in a continuous relationship since transplantation, agree to participate, and have a spouse (the survivor) willing to provide us their contact information. However, all partners for whom we received contact information in the study's first 20 months were invited to participate, and 72% of those contacted participated. These participants showed good representation in regard to sex, type of transplantation, diagnosis, and other demographic characteristics. Compared with nonparticipants, participant spouses were more likely to be female and partnered to allogeneic transplantation survivors. No participant group differences were found for age, income, education, occupational status, and time since transplantation. Spouse outcomes were unrelated to type of transplantation (data not shown). Another limitation was that the peer-nominated controls were matched to survivors (not partners) because our initial focus was the long-term QOL of HCT survivors.17 Nonetheless, the control group provided a comparison that was more similar to the spouse group with regard to ethnicity/race, education, and socioeconomics than US population norms. Future studies of family caregivers would benefit from close matching of the control group to the partner. In summary, results of this study indicate that partners experience equal emotional and greater social costs of cancer/HCT than survivors without the compensatory benefits of PTG that survivors report. Most striking was that these effects were found an average of 7 years after HCT, when presumably active caregiving is long over. Our data suggest unmet mental health needs for partners experiencing depressive symptoms. Further study and clinical attention to these forgotten survivors is needed to replicate these findings and to reduce the burden on partners and, ultimately, on the survivors as well. Family members should be screened for distress periodically, with attention to those most vulnerable to psychosocial sequelae. Prevention and treatment efforts could include information and education, group support, and individual and family counseling.
The authors indicated no potential conflicts of interest.
Conception and design: Elizabeth A. Hahn, David Cella, Michael A. Andrykowski, Marianne J. Brady, Mary M. Horowitz, Kathleen A. Sobocinski, John R. Wingard Administrative support: Michelle M. Bishop, David Cella, Mary M. Horowitz, John R. Wingard Provision of study materials or patients: Michelle M. Bishop, David Cella, Mary M. Horowitz, John R. Wingard Collection and assembly of data: Elizabeth A. Hahn, David Cella, Kathleen A. Sobocinski, J. Douglas Rizzo, John R. Wingard Data analysis and interpretation: Michelle M. Bishop, Jennifer L. Beaumont, Elizabeth A. Hahn, David Cella, Michael A. Andrykowski, Marianne J. Brady, Mary M. Horowitz, Kathleen A. Sobocinski, J. Douglas Rizzo, John R. Wingard Manuscript writing: Michelle M. Bishop, Jennifer L. Beaumont, Elizabeth A. Hahn, David Cella, Michael A. Andrykowski, Marianne J. Brady, Mary M. Horowitz, Kathleen A. Sobocinski, J. Douglas Rizzo, John R. Wingard Final approval of manuscript: Michelle M. Bishop, Jennifer L. Beaumont, Elizabeth A. Hahn, David Cella, Michael A. Andrykowski, Marianne J. Brady, Mary M. Horowitz, Kathleen A. Sobocinski, J. Douglas Rizzo, John R. Wingard
Supported by Grants No. R01 CA81320 (J.R.W.) and K23 CA82350 (J.D.R.) from the National Institutes of Health. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
= .05/3 = .017). We used 
2 statistics to compare the proportions of depressed participants (those who scored above the clinical cutoff for depression) who reported taking psychotropic medications or receiving support services, as well as those who reported use of at least one mental health treatment. Multiple linear regression analyses were used to identify exploratory/hypothesis-generating factors related to partner QOL or growth. Regression analyses were conducted on QOL domain and PTG using the following steps: (1) univariate tests of relationship between outcome and each predictor individually were conducted; (2) a multiple-variable model was created including all predictors with univariate values of P < .25
) Only spouses of survivors enrolled onto the study's first 20 months were contacted. (
) Failed to return signed consent. (
) More participants than nonparticipants were women (65% v 50%, respectively) and partners of allogeneic survivors (45% v 34%, respectively; P < .05 for both). Participants and nonparticipants did not differ by age, income, education, occupational status, or time since transplantation.
