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Unpaid caregivers face significant burdens, yet measurement tools vary widely. Standardized instruments are crucial for accurately assessing caregiver burden and costs in research.

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Area of Science:

  • Health Economics
  • Caregiver Studies
  • Sociology

Background:

  • Unpaid caregiving imposes substantial financial, time, and quality-of-life burdens on individuals.
  • Existing research on disease burdens inadequately addresses the experiences and costs associated with unpaid caregivers.
  • There is a need to better understand and quantify the costs borne by unpaid caregivers.

Purpose of the Study:

  • To conduct a scoping literature review to identify instruments used for measuring caregiver burden.
  • To inform future research on the economic costs associated with unpaid caregiving.
  • To assess the characteristics of existing caregiver burden measurement tools.

Main Methods:

  • Systematic review of articles estimating costs or burdens of unpaid caregiving in the United States.
  • Inclusion of studies using survey or cohort designs with quantitative data analysis.
  • Identification and analysis of survey instruments and other data sources used to measure caregiver burden and costs.

Main Results:

  • 27 unique survey instruments were identified across 46 articles.
  • Of these, 89% were validated, 46% were publicly available, and 54% were caregiver-specific.
  • 39% of studies developed custom questionnaires, highlighting a lack of standardized tools.
  • Six non-survey data sources were also identified for cost estimation.

Conclusions:

  • The heterogeneity of measurement tools hinders cross-study comparability.
  • There is a critical need for standardized, validated, and accessible instruments to accurately measure caregiver burden.
  • Improved measurement is essential for advancing research and improving outcomes for patients and their caregivers.