Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration.
Academic Article
Overview
abstract
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-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.
