Assessing Caregiver Burden in Kidney Failure: A Systematic Review of Measurement Properties of Instruments

Caregiver burden in end-stage kidney disease requires assessment using validated instruments. This systematic review evaluated measurement properties of caregiver burden instruments in end-stage kidney disease using Consensus-Based Standards for the Selection of Health Measurement Instruments methodology. We searched 8 databases (PubMed, CINAHL, Embase, Web of Science, MEDLINE, Cochrane Library, Scopus, and PsycINFO) for studies evaluating measurement properties of caregiver burden instruments in caregivers of patients with kidney failure. The Consensus-Based Standards for the Selection of Health Measurement Instruments Risk of Bias checklist assessed methodological quality, and Grading of Recommendations Assessment, Development and Evaluation approach evaluated evidence quality. Twenty-four studies evaluating 21 distinct caregiver burden instruments were included. The Zarit Burden Interview, Caregiver Burden Scale, and Beck Depression Inventory were most frequently evaluated. Only a few instruments had high-quality evidence of sufficient content validity, internal consistency, test-retest reliability, and construct validity. Cross-cultural validity was assessed for only 9 instruments, with most rated as indeterminate owing to methodological limitations. No studies evaluated responsiveness to change over time. Quality of evidence was low to very low for most measurement properties, highlighting significant gaps in validation research. The Zarit Burden Interview, Caregiver Burden Scale, and Beck Depression Inventory show promising validity and reliability but require further testing. Rigorously conducted validation studies, involvement of caregivers of patients with kidney failure in content validation, and cross-cultural adaptations are priorities for optimizing burden assessment in this unique population.