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.

ABSTRACT:

Introduction

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.

Methods

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. Quantitative data were analyzed using descriptive statistics and qualitative data were thematically analyzed.

Results

All 23 PR-COIN sites responded to the survey. PROs were col

SUBMITTER: Pan N 

PROVIDER: S-EPMC11753412 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature