Quality of Life in Caregivers of Patients Randomized to Standard- Versus Extended-Hours Hemodialysis

Introduction: Caregivers are essential for the health, safety, and independence of many patients and incur financial and personal cost in this role, including increased burden and lower quality of life (QOL) compared to the general population. Extended-hours hemodialysis may be the preference of some patients, but little is known about its effects on caregivers. Methods: Forty caregivers of participants of the ACTIVE Dialysis trial, who were randomized to 12 months extended (median 24 hours/wk) or standard (12 hours/wk) hemodialysis, were included. Utility-based QOL was measured by EuroQOL-5 Dimension-3 Level (EQ-5D-3L) and Short Form-6 Dimensions (SF-6D) and health-related QOL (HRQOL) was measured by the 36-Item Short Form Health Survey (SF-36) physical component summary (PCS) and mental component summary (MCS) and the Personal Wellbeing Index (PWI) at enrolment and then every 3 months until the end of the study. Results: At baseline, utility-based QOL and HRQOL were similar in both groups. At follow-up, caregivers of people randomized to extended-hours dialysis experienced a greater decrease in utility-based QOL measured by EQ-5D-3L compared with caregivers of people randomized to standard hours (-0.18 +/- 0.30 vs. -0.02 +/- 0.16, P = 0.04). There were no differences between extended- and standard-hours groups in mean change in SF-6D (0.03 +/- 0.12 vs. -0.04 +/- 0.1, P = 0.8), PCS (-1.2 +/- 9.8 vs. -5.6 +/- 9.8, P = 0.2), MCS (-4.1 +/- 11.2 vs. - 0.5 +/- 7.1, P = 0.4), and PWI (2.3 +/- 17.6 vs. 0.00 +/- 20.4, P = 0.9). Conclusion: Poorer utility-based QOL, as measured by the EQ-5D-3L, was observed in caregivers of patients receiving extended-hours hemodialysis in this small study. Though the findings are exploratory, the possibility that mode of dialysis delivery negatively impacts on caregivers supports the prioritization of research on burden and impact of service delivery in this population.