Advancing the measurement of caregiver impact: Data collection priorities aligned with caregiver, health technology assessment, and policy stakeholders.

Abstract

Background: Family caregiving plays a central role in the US health care system, with substantial economic, health, and policy implications. In 2024, the estimated economic value of unpaid caregiving exceeded $1 trillion, with tens of millions of individuals providing care nationwide. However, caregiver impacts are inconsistently measured and rarely incorporated into clinical evidence, economic evaluations, and health technology assessments, limiting their use in coverage, formulary, and policy contexts. As a result, health care decision-making may not fully capture the broader benefits, costs, and tradeoffs of interventions that shift care responsibilities to families. Heterogeneity in measurement approaches and lack of consensus on which caregiver impacts are most relevant further constrain comparability and downstream application of available evidence.

Objective: To identify evidence gaps and priorities for caregiver impact data collection aligned with caregiver, health technology assessment, and policy stakeholders to support consistent, relevant evidence generation for value assessment and health care decision-making in the US.

Methods: We conducted a targeted literature review of US-focused studies that assessed caregiver impact using validated or adapted measurement tools, including peer-reviewed or gray literature reporting caregiver outcomes or measurement gaps. Findings informed a 6-hour, in-person, multistakeholder workshop with 11 participants representing academic research, patient and caregiver perspectives, and advocacy organizations. Participants reviewed and prioritized caregiver impact elements through an iterative ranking exercise and completed a structured voting exercise to identify priorities for advancing caregiving data collection and use.

Results: The targeted literature review identified substantial heterogeneity in caregiver impact measurement, including variation in elements assessed, instruments used, timing, and reporting practices, with limited assessment across the patient journey. Ten caregiver impact elements were identified and subsequently refined to 8 prioritized elements through stakeholder consensus. Financial strain, physical health, and emotional strain emerged as the highest-priority elements. In the voting exercise, participants prioritized economic focus (eg, budget impact, cost consequences, and resource use), standardized metrics, and longitudinal or trajectory-based assessment as key opportunities to improve the usability of caregiver evidence.

Conclusions: Caregiver impacts remain underrepresented in US evidence frameworks owing to inconsistent measurement and lack of alignment on the most salient outcomes. Findings from this study highlight pragmatic, stakeholder-informed priorities to strengthen caregiver data collection and reporting. Adopting standardized core elements, validated instruments, and assessment over time can improve the visibility and integration of caregiver impacts across research, policy, and health care delivery.