Patient-perceived caregiver burden after intense oncology treatment.

Abstract

11104 Background: Although oncology caregiver burden is well-known (e.g. Alam, JCO , 2020), less is understood about how patients themselves perceive their caregivers’ quality of life (QOL) after intensive cancer treatment such as hematopoietic cell transplantation (HCT). Methods: Patients undergoing allogeneic HCT at Dana-Farber Cancer Institute (12/2017 to 12/2021) were surveyed approximately 100 and 180 days post-HCT. We utilized a questionnaire adapted from the Caregiver Quality of Life Index–Cancer Scale (Weitzner, Qual Life Res, 1999), redesigned to be administered to patients themselves. Caregiver stress was assessed with the question “My caregiver seems more stressed than before my transplant” (0: not at all to 4: very much), dichotomized into lower (0–2) versus higher (3–4) stress. Familial financial burden was measured with the question “How satisfied are you with your family’s present financial situation?” (1: not satisfied at all to 5: completely satisfied), dichotomized into higher (1-3) versus lower (4-5) burden. Paired McNemar tests assessed changes in caregiver stress between Day 100 and Day 180, and multivariable logistic regression modeled the relationship between financial burden and caregiver stress, adjusting for age and gender. Results: At Day 100 and Day 180, 165 and 142 patient surveys were analyzed (overall response rates were 60.5% and 70.0% among patients alive at each time); 89 patients completed surveys at both times. The mean age was 61.5, 38.2% were female, and 61.8% received reduced-intensity HCT conditioning. Most respondents (86.1%) identified their caregiver as a family member (as compared to a friend or paid professional). Approximately half reported their caregiver was working at both Day 100 (51.2%) and Day 180 (53.2%). The majority felt that the HCT process had not negatively impacted their relationship with their caregiver (93.3% at Day 100; 96.5% at Day 180). At Day 100, 30.9% of respondents perceived their caregiver as being more stressed than prior to HCT, compared with 33.3% at Day 180 (comparing the two time point proportions: χ 2 = 0.80, p = 0.37). Lower financial burden was significantly associated with lower odds of reporting increased caregiver stress at both Day 100 (OR = 0.49, 95% CI: 0.24-0.99) and at Day 180 (OR = 0.17, 95% CI: 0.07–0.39). Conclusions: In this cohort of patients undergoing intense oncology treatment, most had caregivers who were working family members. A minority perceived increased caregiver stress due to their treatment, with similar perceptions at both Day 100 and Day 180. This relatively modest perception of stress potentially reflects caregivers’ successful efforts to lower patients’ self-perceived burden. Moreover, lower familial financial burden was strongly protective against patient-perceived caregiver stress, particularly at Day 180, suggesting that financial circumstances meaningfully influence how patients interpret and perceive caregiver burden.