Publication
Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration
Autrey A, Rifkin-Zenenberg S, Hills T, Salant J, May R, Rabinowitz E, Heneghan C, Drach L, Jones E, Thienprayoon R · Journal of Pain and Symptom Management · 2025
Background Use of patient reported outcome measures (PROMs) are crucial to providing patient-centered care. In 2022, the Pediatric Palliative Improvement Network developed a project to standardize the assessment of patient experiences with PPC services. Measures By December 31, 2022, we aimed for: 10 participating sites, 50% of eligible PPC patient experiences assessed, and 25% response rate. Intervention Project leaders provided guidance for study processes, accurate timely data gathering, and collaborative learning. Data was collected from January to December, 2022. Sites utilized two standardized key indicator questions, including one National Quality Forum-endorsed palliative care PROM. Results Fourteen sites participated with 69% of patients (1631/2360) surveyed and 304 responses (19% response rate) gathered. Patients/Families felt heard and understood and would recommend PPC. Conclusions/Lessons learned Standardized assessments of patient experience with PPC are feasible and informative. PROMs can ensure that PPC services meet patient needs, identify opportunities for improvement, and demonstrate value.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.