Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions

Abstract

PURPOSE: Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and and simultaneously investigate relationship between caregiver distress, patient distress and patient QoL. METHODS: We measured caregiver anxiety, depressive symptoms, perceived stress, sleep quality, caregiver burden and pQoL in148 dyads compared to clinical thresholds or population norms. To reduce comparisons, we created a composite distress score from affective measures. Associations within dyads were examined via correlation and path analysis. RESULTS: Most dyads scored above norms for psychological measures. Patient distress was positively associated with caregiver distress. Higher caregiver distress significantly predicted poorer pQoL after accounting for the interdependence of patient and caregiver distress. Specifically, patients' physical functioning was the primary driver of this interrelationship. CONCLUSIONS: Allo-HSCT patients and their caregivers reported elevated distress pretransplant. Both patient and caregiver distress contributed to pQoL, with patients' physical functioning accounting significantly for caregiver well-being. Supporting the patient-caregiver dyad before transplantation is a priority for supportive services.

Feasibility study of a wellness intervention for caregivers of patients undergoing hematopoietic stem cell transplantation: The Ready to CARE Intervention

“…Once enrolled, our retention rates were relatively high and similar to other feasibility studies with this population (Bangerter et al., 2018; Simoneau et al., 2017). The second survey (designed to offer a no-treatment run-in phase to demonstrate what occurs with only the passage of time and no intervention) was impractical given the variation in the timing at which patients were progressed to transplant, and will need to be omitted in our future studies in this line of research.…”

A randomized control trial of stress management for caregivers of stem cell transplant patients: Effect on patient quality of life and caregiver distress

“…Patient and caregiver psychological status are interrelated across many domains. For example, we noted CG‐distress in the peritransplant period was associated with patient QoL . In that analysis, patient physical functioning was a primary contributor to CG‐distress after accounting for interdependence of caregiver and patient distress.…”

Multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation: A randomized clinical trial

“…These encouraging findings warrant further testing in a multisite, randomized clinical trial. Despite the recruitment of caregivers at the time of heightened stress before HCT, 11,19,[32][33][34] BMT-CARE was feasible with high enrollment and retention rates. These findings are particularly relevant because of the challenges in recruiting caregivers for supportive care interventions, especially with the competing demands on caregivers' time.…”

“…Despite their substantial caregiving burden, relatively few interventions target the needs of caregivers of HCT recipients, and there are no interventions that span the transplant course by addressing the caregiving burden before, during, and immediately after HCT . Two studies examined the effect of problem solving and stress management interventions for caregivers of allogeneic HCT recipients after the patients' hospitalization for HCT, but they did not target caregivers' needs before and during HCT (ie, when caregivers report the highest distress) . Moreover, because of the extent of the caregiving burden in this population, more comprehensive multimodal psychosocial interventions spanning the HCT course are needed to promote caregiver coping skills and improve overall QOL while reducing the burden and distress …”

“…1,[12][13][14] Two studies examined the effect of problem solving and stress management interventions for caregivers of allogeneic HCT recipients after the patients' hospitalization for HCT, [16][17][18] Cancer April 15, 2020 but they did not target caregivers' needs before and during HCT (ie, when caregivers report the highest distress). 11,19 Moreover, because of the extent of the caregiving burden in this population, more comprehensive multimodal psychosocial interventions spanning the HCT course are needed to promote caregiver coping skills and improve overall QOL while reducing the burden and distress. 11,13,15,20 We conducted a single-center, randomized clinical trial to evaluate the feasibility and preliminary efficacy of a multimodal psychosocial intervention for caregivers of patients undergoing HCT (BMT-CARE) designed to improve caregivers' QOL, caregiving burden, mood, and self-efficacy.…”