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Noël PH, Penney LS, Finley EP, Parish J, Pugh JA, Delgado RE, Peacock KS, Dang S, Trivedi R, Bouldin ED, Pugh MJ, Rupper RW, Kalvesmaki A, Leykum LK, Elizabeth Dole Center of Excellence for Veteran and Caregiver Research Team. Caregiver-specific quality measures for home- and community-based services: Environmental scan and stakeholder priorities. Journal of the American Geriatrics Society. 2024 Jul 31.
Although family caregivers are increasingly recognized for their essential role in helping vulnerable adults live in the community for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of home- and community-based services (HCBS). Our overall goal was to identify measurement gaps to guide monitoring and improve HCBS. Caregiver-specific measurement priorities were identified during a multi-level stakeholder engagement process that included 34 Veterans, 24 caregivers, and 39 facility leaders, clinicians, and staff across four VA healthcare systems. We mapped items from national quality measure sets for HCBS identified during an environmental scan onto the stakeholder-identified measurement priorities. Only 5 of 11 non-VA measure sets and three of four VA measure sets explicitly included caregiver-specific items that were aligned with or relevant to stakeholders' measurement priorities. Six of 14 stakeholder-identified priorities were not reflected in any measure sets, such as those that explicitly assess caregiver-reported experience with services that directly or indirectly support their role as caregivers within HCBS. Although family caregivers fulfill a critical role in helping adults with complex medical needs live independently for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of HCBS. Measures that acknowledge caregivers' roles and incorporate their priorities can help healthcare systems to better monitor and improve HCBS quality, thereby enabling Veterans to remain in the community as long as possible.