Quality of life in caregivers of patients randomized to standard versus extended hour hemodialysis

Abstract 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/week) or standard (12 hours/week) hemodialysis, were included. Utility-based QOL measured by EuroQOL-5 Dimension-3 Level (EQ-5D-3L) and Short Form-6D (SF-6D); and health related QOL (HRQOL) measured by Short Form-36 (SF-36) physical component summary (PCS) and mental component summary (MCS), and Personal Wellbeing Index (PWI) were measured at enrolment then every 3 months until end of 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 to 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.