Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration.

Abstract

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. By December 31, 2022, we aimed for: 10 participating sites, 50% of eligible PPC patient experiences assessed, and 25% response rate. 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. 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. 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.