• Claire E O'Hanlon, Karleen F Giannitrapani, Charlotta Lindvall, Raziel C Gamboa, Mark Canning, Steven M Asch, Melissa M Garrido, ImPACS Patient and Caregiver Panel, Anne M Walling, and Karl A Lorenz.
• Center for the Study of Healthcare Innovation, Implementation and Policy (CSHIIP), VA Greater Los Angeles Health Care System, Los Angeles, CA, USA. Claire.O'Hanlon@va.gov.
• J Gen Intern Med. 2022 May 1; 37 (6): 142914351429-1435.

BackgroundDevelopment and prioritization of quality measures typically relies on experts in clinical medicine, but patients and their caregivers may have different perspectives on quality measurement priorities.ObjectiveTo inform priorities for health system implementation of palliative cancer and end-of-life care quality measures by eliciting perspectives of patients and caregivers.DesignUsing modified RAND-UCLA Appropriateness Panel methods and materials tailored for knowledgeable lay participants, we convened a panel to rate cancer palliative care process quality measure concepts before and after a 1-day, in-person meeting.ParticipantsNine patients and caregivers with experience living with or caring for patients with cancer.Main MeasuresPanelists rated each concept on importance for providing patient- and family-centered care on a nine-point scale and each panelist nominated five highest priority measure concepts ("top 5").Key ResultsCancer patient and caregiver panelists rated all measure concepts presented as highly important to patient- and family- centered care (median rating ≥ 7) in pre-panel (mean rating range, 6.9-8.8) and post-panel ratings (mean rating range, 7.2-8.9). Forced choice nominations of the "top 5" helped distinguish similarly rated measure concepts. Measure concepts nominated into the "top 5" by three or more panelists included two measure concepts of communication (goals of care discussions and discussion of prognosis), one measure concept on providing comprehensive assessments of patients, and three on symptoms including pain management plans, improvement in pain, and depression management plans. Patients and caregivers nominated one additional measure concept (pain screening) back into consideration, bringing the total number of measure concepts under consideration to 21.ConclusionsInput from cancer patients and caregivers helped identify quality measurement priorities for health system implementation. Forced choice nominations were useful to discriminate concepts with the highest perceived importance. Our approach serves as a model for incorporating patient and caregiver priorities in quality measure development and implementation.© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.

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