Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)

Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)

Klick J; Humphrey L; Friebert S; Rogers M; Williams C

Journal of Pain and Symptom Management

2020

administrative personnel; child; conference abstract; controlled study; District of Columbia; hospital patient; human; palliative therapy; perception; phase 1 clinical trial; program development; workflow

Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for Pediatric Hospice and Palliative Care program development. Original Research Background: Pediatric palliative care (PPC) has evolved dramatically over the last ten years. In many ways PPC services have become the standard of practice, effectively changing the paradigm of program development. Unfortunately, barriers remain for programs' ability to meet the clinical demand, including limited benchmark information to inform program development. While some data is available, PPC programs perceive the data as not specific or not applicable to PPC needs. This perception has facilitated low participation and a paucity of data. Research Objectives: In 2017, three PPC program directors undertook an iterative process to address this data challenge.

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March 2020 List