Economic survivorship stress is associated with poor health-related quality of life among distressed survivors of hematopoietic stem cell transplantation

Hematopoietic stem cell transplantation (HSCT) is a demanding treatment for hematologic malignancies. The toxic preparative regimen most patients receive (high-dose chemotherapy, sometimes with total body irradiation) suppresses or destroys their immune function, necessitating protective isolation and causing side effects including fatigue, cognitive difficulties, and sexual dysfunction [1–2]. For many survivors these difficulties are resolved within the first year after transplant; however, they can persist, and survivors continue to face increased risk of all-cause mortality [3–5]. HSCT has also been associated with depression, anxiety, fear of cancer recurrence, and symptoms of post-traumatic stress disorder before, during, and after transplant [4, 6–7]. These physical and psychological effects occur in conjunction with practical difficulties that have been conceptualized as chronic stressors in other populations. Here we focus on three that are interrelated and commonly reported after transplant: persistent financial, employment, and insurance stressors. These stressors (which we refer to collectively as economic survivorship stressors) have the potential to exacerbate negative physical and psychological effects of transplant, thereby reducing survivors' health-related quality of life (HRQOL). HRQOL encompasses the extent to which survivors experience a sense of well-being, have the ability to carry out activities of daily living, and experience disease-related symptoms. It represents a critical aspect of the transplant recovery and survivorship experience, and economic survivorship stressors may adversely affect HRQOL through biological, behavioral, and psychological pathways [8–9]. For instance, financial stress (perceived inadequacy of financial resources) is associated with worse physical and psychological health in community populations [10–12], and has been associated with decreased HRQOL and elevated distress among low-income survivors of breast and gynecologic cancers [13]. Cancer-related financial stress and strain have also been associated with adverse psychological well-being among survivors of breast, prostate, and lung cancer [14]. Furthermore, qualitative work conducted with cancer survivors and their caregivers has demonstrated that financial worries and difficulties have a negative impact on family lifestyle, activities, roles, and relationships [15]. In HSCT, the potential for financial stress is high because of the costliness of the treatment [2], and additional expenses due to treatment-related complications, medications, transportation to and from transplant facilities, and routine medical follow-up. Employment-related problems are associated with financial stress, in addition to being stressful in their own right. Cancer survivors report difficulties including non-supportive work environments, changes in work schedules and relationships with colleagues, perceived employer discrimination, and reductions in perceived work ability, all of which may be persistent areas of concern with implications for their return to work, financial standing, and overall well-being [16]. Among HSCT survivors, enduring physical effects of transplant can prevent or substantially delay return to work [6]. One study found that approximately 40% of HSCT survivors had not returned to work 1-year post-transplant, and approximately 30% had not returned 2-years post-transplant [17]. Caregivers also lose income due to missed work, and incur substantial out-of-pocket expenses in order to stay at or near the treatment center [18]. Finally, many transplant survivors struggle with health insurance claims, policy caps, and obtaining future coverage. In one study approximately 32% of survivors reported that obtaining insurance was problematic, and 31% reported concerns about changing jobs for fear of losing health insurance coverage [19]. In a study of 10-year survivors of HSCT, 24% reported a history of health insurance denial compared to 0% of age-, sex-, and race-matched controls [5]. In addition to being a source of stress and frustration, insurance problems may increase financial burden among survivors who require ongoing surveillance. The role of insurance stress in cancer survivors' HRQOL has not been explored, although health insurance status has been shown to predict HRQOL in some studies. For instance, lack of insurance coverage has been associated with poorer HRQOL among survivors of prostate cancer [20]. However, insurance status was unrelated to HRQOL in a sample of Hispanic and African-American cancer patients [21]. The present study investigated these economic survivorship stressors and their association with HRQOL among survivors of HSCT. Participants were 181 men and women who had undergone HSCT 9–36 months prior to assessment. First, we examined survivors' post-transplant perceptions of financial, employment, and insurance stressors. Second, we investigated these perceived stressors as predictors of survivors' HRQOL, hypothesizing that greater economic survivorship stress would be associated with poorer HRQOL. Because stress and coping theory posits that people's perceptions of a situation (as opposed to the situation's objective characteristics) are most important in determining health [22], we predicted that associations between economic survivorship stress and HRQOL would remain even after controlling for objective indicators of socioeconomic position including income, education, and employment status. We also examined potential confounding effects of survivors' sociodemographic and medical characteristics on the hypothesized associations. A final, exploratory aspect of this study was based on the fact that people's social environments and personal resources influence how they appraise and respond to a stressor [22]. Informed by both relative deprivation theory [23–24], which predicts that greater financial disparities are associated with poorer health in part because people experience distress when they perceive their economic standing as worse than others, and social comparison theory [25], which posits that people compare themselves to others when evaluating themselves on a particular dimension, we reasoned that survivors would appraise economic survivorship stressors differently depending on their economic standing relative to others in their social environment. We investigated the effects of the financial crisis that occurred during this study, which led to a sudden, profound shift in the economic well-being of many Americans. We hypothesized that, compared to survivors who completed the study before the crisis, those who completed it after the crisis would appraise each of these stressors as less dire because of the knowledge that many people were experiencing similar problems. Although pinpointing the exact timing of the recession is difficult, experts identify the very public failures in the financial sector in September 2008 as a pivotal turning point [26–27]. We also examined whether the portion of survivors' transplant paid by health insurance, which varies across individuals and affects how much of the treatment costs they bear, would moderate the association between economic survivorship stress and HRQOL. This situational factor may influence how people appraise their financial demands; thus, we predicted that the adverse effects of each economic survivorship stressor on HRQOL would be amplified among those participants whose insurance covered the smallest portions of their transplant expenses.