Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms

Abstract

Background: Informal caregivers play a crucial role in dialysis care but may experience significant burden, potentially affecting both caregiver and patient outcomes. Research on caregiver burden and health-related quality of life (HRQoL) and the relation to patient-reported outcomes (PROs) is lacking. Therefore, we aimed to (i) describe informal caregivers' experienced burden and HRQoL and (ii) investigate how these are related to dialysis patients' HRQoL and symptoms.

Methods: We conducted a cross-sectional study at dialysis initiation with 202 adult informal caregiver-dialysis patient dyads. Caregiver burden was measured with the Self-Perceived Pressure from Informal Care (SPPIC) questionnaire, HRQoL with the 12-item Short Form Health Survey (SF-12), and symptom number and burden with the Dialysis Symptom Index (DSI). Data were analysed using linear and logistic ordinal regression.

Results: Around 38% of caregivers experienced moderate to high burden. Patients' lower mental HRQoL [adjusted odds ratio (aOR) = 0.95, 95% confidence interval (CI) 0.92; 0.99], higher symptom number (aOR = 1.07, 95% CI 1.02; 1.12) and higher symptom burden (aOR = 1.03, 95% CI 1.01; 1.04) were associated with greater odds of higher caregiver burden. Patients' lower mental HRQoL (β = 0.30, 95% CI 0.15; 0.46), higher symptom number (β = -0.55, 95% CI -0.78; -0.31) and higher symptom burden (β = -0.17, 95% CI -0.25; -0.10) were also associated with a lower mental HRQoL in caregivers.

Conclusion: We show that a third of caregivers feel moderate to high burden and that caregiver burden is associated with patients' mental HRQoL and symptoms. These findings highlight the importance of recognizing informal caregivers and the nature of their burden.

Keywords: caregiver burden; dialysis; health-related quality of life; kidney failure; symptom burden.

Graphical Abstract

Figure 1:

Assessment of the association between PROs and informal caregiver burden. Graphs show estimated probabilities on the level of caregiver burden with the corresponding 95% CIs. Higher scores indicate better HRQoL. Probabilities are estimated using imputed adjusted ordinal regression models.

Figure 2:

Assessment of the association between PROs and informal caregivers’ mental HRQoL. Graphs show estimated marginal means of the MCS score of the SF-12 with the corresponding 95% CIs. Higher scores indicate better HRQoL. Mean scores are estimated using imputed adjusted linear regression models.

Figure 3:

Assessment of the association between PROs and informal caregivers’ physical HRQoL. Graphs show estimated marginal means of the PCS score of the SF-12 with the corresponding 95% CIs. Higher scores indicate better HRQoL. Mean scores are estimated using imputed adjusted linear regression models.