• Jackelyn Y Boyden, Jori F Bogetz, Emily E Johnston, Rachel Thienprayoon, WilliamsConrad S PCSPPalliative Care Program and Department of Pediatrics (C.S.P.W.), Medical University of South Carolina, Charleston, South Carolina, USA., Michael J McNeil, Arika Patneaude, Kimberley A Widger, Abby R Rosenberg, and Prasanna Ananth.
• Department of Family and Community Health, School of Nursing (J.Y.B.), University of Pennsylvania, Philadelphia, Pennsylvania, USA. Electronic address: jboyden@upenn.edu.
• J Pain Symptom Manage. 2023 May 1; 65 (5): e483e495e483-e495.

AbstractPediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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