Patient, Family, and Caregiver Engagement in the Development of Palliative Care Quality Indicators: A Scoping Review.

Abstract

ObjectiveQuality indicators (QIs) are vital to appraising and improving palliative care and should reflect the needs of patients, family members, and caregivers. This scoping review describes how patients', family members' and/or caregivers' priorities, preferences, and needs are incorporated into the development of palliative care QIs.MethodsWe conducted a scoping review in accordance with the framework developed by Arksey and O'Malley and updated by Levac et al We searched MEDLINE, EMBASE, CINAHL, and PsycInfo to identify peer-reviewed literature and Google to identify grey literature. Publications from 2010 to 2025 were screened for inclusion, with relevant information from eligible studies extracted and synthesized into categories that aligned with the objectives of the review and which were developed during data synthesis.ResultsThirty-one peer-reviewed studies met inclusion criteria, along with 1 grey literature source. QI sets targeted diverse populations and settings, including cancer care (n = 6, 19.3%), disease-specific groups (n = 5, 16.1%), ambulatory and home palliative care (n = 3, 9.7%), intensive care (n = 2, 6.4%), and hospice (n = 2, 6.4%), as well as general palliative care populations (n = 31, 25.5%). Most studies (25/31, 80.6%) used multi-method, consensus-based approaches to develop QIs, typically combining literature reviews with Delphi or RAND/UCLA processes. Eleven of 31 (35.5%) studies involved patients, family members, and/or caregivers in QI development, most often as Delphi panellists in the development stage or through early-stage qualitative interviews and focus groups; 20 of the 31 (64.5%) studies reporting no engagement. The grey literature source included more extensive engagement through advisory committee participation and public consultation.ConclusionsPatients, family, and caregivers are infrequently and inconsistently involved in the development of palliative care QIs. Existing QIs may reflect clinician and system priorities more than the lived experiences of those receiving care, underscoring the need for more systematic and active engagement in future QI development.