Trajectories of experiences and health-related quality of life of informal caregivers of home and in-center dialysis patients: A multicenter longitudinal cohort study

RATIONALE & OBJECTIVE: Starting dialysis is challenging for both patients and their informal caregivers. Caregivers help patients adapt and adhere to treatment by providing practical and emotional support, but these responsibilities can take a considerable toll on them. As little is known about how caregiver experiences evolve after dialysis initiation, we aimed to: 1) assess the trajectory of experiences and health-related quality of life (HRQoL) of caregivers of patients on dialysis during the first year of dialysis, 2) assess whether differences in these trajectories exist between caregivers of home dialysis patients and those of in-center hemodialysis (ICHD) patients, and 3) explore in which domains caregivers desire support over time.

STUDY DESIGN: Multicenter, longitudinal cohort study.

SETTING & PARTICIPANTS: 202 dyads of incident dialysis patients and their adult informal caregivers.

EXPOSURE: Home dialysis and ICHD.

OUTCOMES: Positive experiences, caregiver burden, depressive symptoms, and HRQoL.

ANALYTICAL APPROACH: Descriptive analyses of desired support and linear mixed models to assess and compare trajectories.

RESULTS: All but two of the caregiver outcomes deteriorated over the first year of dialysis. The change over time (β, 95%CI) was significant for positive experiences (-1.44, -2.36; -0.51), depressive symptoms (5.20, 3.15; 7.25), physical HRQoL (-5.73, -9.20; -2.26), general HRQoL (-0.13, -0.17; -0.07) and perceived health status (-9.40, -15.12; -3.67), but not for caregiver burden (0.85, -0.02; 1.72) or mental HRQoL (-2.99, -6.93; 0.94). No differences in the trajectories were found between caregivers of patients receiving home dialysis and ICHD, but these groups did differ in desired support.

LIMITATIONS: Small sample size of subgroups.

CONCLUSIONS: Informal caregivers experience significant challenges during the first year of dialysis, marked by a notable decline in positive experiences, physical and general HRQoL, and perceived health status, alongside an increase in depressive symptoms, regardless of dialysis location. These findings underscore the need for targeted support for informal caregivers in dialysis care.

PlAIN-LANGUAGE SUMMARY: The initiation of maintenance dialysis treatments presents notable challenges not only to patients but also to their informal caregivers, such as spouses, other family members, or friends. However, there is limited understanding of how these caregivers are affected over time. Therefore, we studied caregivers’ experiences and health-related quality of life (HRQoL) during the first year of dialysis treatments received by the individual for whom they provide care. We found that caregivers reported a decline in positive experiences, worse physical and general HRQoL, and more depressive symptoms over time, whether dialysis was implemented in the home or a dialysis center. However, the types of support needed by caregivers of home and in-center dialysis patients differed. These findings underscore the need for targeted support for informal caregivers in dialysis care.