Quality indicators (QIs) are essential tools for assessing and improving the delivery of palliative care. The authors framed this scoping review to describe how the priorities, preferences, and needs of patients, family members, and caregivers are incorporated into the development of palliative care QIs. The review sought to determine the frequency, methods, and stages at which these stakeholders are engaged so as to evaluate whether existing QIs reflect lived experience or primarily clinician and system priorities.
The review was conducted in accordance with the scoping review framework originally developed by Arksey and O’Malley and updated by Levac et al. The authors searched multiple bibliographic databases—MEDLINE, EMBASE, CINAHL, and PsycInfo—for peer-reviewed literature and used Google to identify grey literature sources. Publications from 2010 through 2025 were screened for inclusion. Relevant information from eligible studies was extracted and synthesized into categories aligned with the review objectives; these categories were developed during the data synthesis phase.
A total of 31 peer-reviewed studies met inclusion criteria, along with one grey literature source. The identified QI sets targeted diverse populations and care settings. Examples reported in the review included:
These figures illustrate that the QI literature spans multiple clinical contexts, though composition and focus varied across studies.
Most studies (25 of 31; 80.6%) employed multi-method, consensus-based approaches for QI development. Typical combinations included literature reviews coupled with structured consensus techniques such as Delphi panels or RAND/UCLA Appropriateness Method processes. This pattern indicates reliance on established consensus methodologies to define and refine candidate QIs.
Engagement of patients, family members, and caregivers in QI development was limited and inconsistent across the peer-reviewed literature. Specifically, 11 of 31 studies (35.5%) reported some form of involvement of these stakeholders. When engagement occurred, it most commonly took the following forms:
However, 20 of the 31 peer-reviewed studies (64.5%) reported no engagement of patients, family members, or caregivers in the QI development process. The uneven nature of participation—both in frequency and in method—suggests that stakeholder input is not yet systematically embedded in QI development processes in palliative care.
The single grey literature source identified in the search reported more extensive stakeholder engagement compared with most peer-reviewed studies. Engagement activities described in that source included advisory committee participation and public consultation. The review highlights this contrast between academic publications and at least one practical or policy-oriented document that used broader engagement mechanisms.
The scoping review concludes that patients, family members, and caregivers are infrequently and inconsistently involved in the development of palliative care quality indicators. As a result, existing QIs may disproportionately reflect clinician and health system priorities rather than the lived experiences and expressed needs of those receiving care and their supports.
The findings underscore a clear need for more systematic, transparent, and active engagement of patients, families, and caregivers in future QI development efforts. Incorporating stakeholder perspectives more consistently—through methods such as participatory advisory committees, public consultation, qualitative elicitation of priorities, and inclusion as consensus panel members—may improve the relevance and responsiveness of QIs to the populations they are intended to serve.
The abstract reports the review methods and aggregated findings but does not provide detailed study-level data, risk-of-bias assessments, or granular descriptions of engagement processes beyond the summarized formats. Where the source lacks further specifics about individual study procedures or outcomes, those details were not reported in the review abstract and thus are not available here.
Current QI development in palliative care more often uses established consensus methodologies but less often includes direct input from patients, family members, and caregivers. To ensure that QIs reflect the priorities and lived experiences of care recipients and their supports, QI developers should plan for consistent, documented stakeholder engagement across development stages and settings.