Identifying and Measuring Caregiver Burdens: A Scoping Review

Unpaid caregiving is associated with significant burdens, including financial strain, time constraints, diminished quality of life, and elevated stress levels. Despite these challenges, existing literature on disease burdens devotes limited attention to caregiver experiences. The aim of this scoping literature review was to identify instruments used to measure caregiver burden to better inform future studies of caregiver costs. This study included articles that estimated the costs or burdens associated with unpaid caregiving to patients in the United States and used a survey or cohort study design to conduct primary or secondary quantitative data analysis. Across the 46 articles abstracted, 27 unique survey instruments were identified; 23 (89%) instruments were validated, 12 (46%) were publicly available, and 14 (54%) were designed for or validated among caregivers. Among studies included in this review, 18 (39%) studies designed their own questionnaires to assess caregiver burden. This review additionally identified six nonsurvey data sources, such as medical claims data, used to estimate caregiver costs. The heterogeneity across measurement tools limits comparability across studies. Standardized, validated, and accessible instruments are essential for understanding caregiver burdens and advancing research to improve outcomes for patients and their caregivers.