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BRIEF RESEARCH REPORT article

Front. Pediatr.
Sec. Pediatric Rheumatology
Volume 12 - 2024 | doi: 10.3389/fped.2024.1443426
This article is part of the Research Topic Building a Learning Health System in Pediatric Rheumatology View all 12 articles

Achieving Reliable Patient Reported Outcomes Collection to Measure Health Care Improvement in a Learning Health Network: Lessons from Pediatric Rheumatology Care and Outcomes Improvement Network

Provisionally accepted
Nancy Pan Nancy Pan 1,2*Esi Morgan Esi Morgan 3,4Meghan Ryan Meghan Ryan 5*Beth Gottlieb Beth Gottlieb 6,7Julia Harris Julia Harris 8,9Tzielan Lee Tzielan Lee 10,11Y Ingrid Goh Y Ingrid Goh 12,13*
  • 1 Hospital for Special Surgery, New York, United States
  • 2 Weill Cornell Medical Center, NewYork-Presbyterian, New York City, New York, United States
  • 3 Seattle Children's Hospital, Seattle, Washington, United States
  • 4 School of Medicine, University of Washington, Seattle, Washington, United States
  • 5 UnityPoint Health, Des Moines, Iowa, United States
  • 6 Long Island Jewish Medical Center, New Hyde Park, New York, United States
  • 7 Cohen Children's Medical Center, New Hyde Park, New York, United States
  • 8 Children's Mercy Kansas City, Kansas City, Missouri, United States
  • 9 University of Missouri–Kansas City, Kansas City, Missouri, United States
  • 10 Stanford Medicine Children’s Health, Stanford, California, United States
  • 11 School of Medicine, Stanford University, Stanford, California, United States
  • 12 Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
  • 13 Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Ontario, Canada

The final, formatted version of the article will be published soon.

    Data from the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) registry suggests that reliable collection of patient-reported outcomes (PROs) varies across sites. The objective of this study was to better understand the practices of collecting PROs at PR-COIN sites.A REDCap survey was sent to the lead representative for each PR-COIN site. Registry data were analyzed to better understand the completion rates of PROs. Interviews of physician leaders of high performing sites were conducted by videoconference, audiotranscribed and themes were summarized. Results: All 23 PR-COIN sites responded to the survey. PROs were collected by 21/23 (91%) sites. Arthritisrelated pain intensity, morning stiffness, and physical function were the top three collected PROs. Most sites collected PROs only on paper with manual scoring. Facilitators to successful collection of PROs included availability of staff, training, and culture. Barriers to PRO collection cited were limited time, lack of infrastructure, and lack of staff.Completion rates of PROs in the registry in top 4 performing centers for morning stiffness was 100%, overall well-being and pain intensity scores ranged from 93-98%, and physical function 69-94%.Interviews with physician leaders indicated overcoming barriers through: integration of PRO collection into workflow, gaining buy-in of stakeholders, and automating PRO collection. Interviewees endorsed importance of automation of data collection for reliable PRO collection.Through understanding our current ability to systematically collect PROs and exploring successful implementation of PRO collection outside our learning health network, we share lessons learned and identify the most influential factors for successful PRO collection in pediatric rheumatology.

    Keywords: Patient Reported Outcomes, pediatric rheumatology, Quality of Life, outcome measures, juvenile idiopathic arthritis

    Received: 04 Jun 2024; Accepted: 13 Nov 2024.

    Copyright: © 2024 Pan, Morgan, Ryan, Gottlieb, Harris, Lee and Goh. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence:
    Nancy Pan, Hospital for Special Surgery, New York, United States
    Meghan Ryan, UnityPoint Health, Des Moines, 50309, Iowa, United States
    Y Ingrid Goh, Hospital for Sick Children, University of Toronto, Toronto, M5G 1X8, Ontario, Canada

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.