• Jackelyn Y Boyden, Mary Ersek, Kimberley A Widger, Judy A Shea, and Chris Feudtner.
• Department of Family and Community Health (J.Y.B.), Department of Biobehavioral Health Sciences (M.E.), School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Pediatrics (J.Y.B., C.F.), Children's Hospital of Philadelphia; Philadelphia, Pennsylvania, USA. Electronic address: jboyden@upenn.edu.
• J Pain Symptom Manage. 2024 Oct 1; 68 (4): e287e302e287-e302.

ContextHome-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities.ObjectivesTo evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the United States.MethodsParticipants included families recruited from the Children's Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity.ResultsEighty-two family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure.ConclusionThe EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.

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