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

Ashley K Autrey1, Stacey Rifkin-Zenenberg2, Tracy Hills3

  • 1Manning Family Children's (A.K.A.), New Orleans, Louisiana, USA; Louisiana State University Health Sciences Center- New Orleans (A.K.A.), New Orleans, Louisiana, USA.

Journal of Pain and Symptom Management
|July 27, 2025
PubMed

Insights

Standardizing patient experience assessments in pediatric palliative care (PPC) is feasible and effective. Patient-reported outcome measures (PROMs) help ensure PPC services meet patient needs and identify areas for improvement.

Area of Science:

  • Pediatric Palliative Care
  • Patient-Centered Outcomes
  • Healthcare Quality Improvement

Background:

  • Patient-reported outcome measures (PROMs) are essential for patient-centered care.
  • In 2022, the Pediatric Palliative Improvement Network initiated a project to standardize patient experience assessments in pediatric palliative care (PPC) services.

Purpose of the Study:

  • To standardize the assessment of patient experiences with PPC services.
  • To evaluate the feasibility and informativeness of standardized PROMs in PPC.

Main Methods:

  • The project involved 14 participating sites from January to December 2022.
  • Standardized key indicator questions, including a National Quality Forum-endorsed PROM, were utilized.
  • Guidance was provided for study processes, data collection, and collaborative learning.

Main Results:

  • 69% of eligible PPC patients were surveyed, yielding 304 responses (19% response rate).
  • Patients and families reported feeling heard and understood.
  • Participants indicated a willingness to recommend PPC services.

Conclusions:

  • Standardized assessments of patient experience with PPC are feasible and provide valuable insights.
  • PROMs are effective tools for ensuring PPC services align with patient needs.
  • This approach aids in identifying improvement opportunities and demonstrating the value of PPC.
Abstract

Keywords:
Collaborative quality improvementPatient reported experience measuresPatient reported outcome measuresPatient satisfactionPediatric palliative care

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