Enrollment disparities in the PCPLC's patient-reported outcome measures (PROMs) study

Authors

Kate E. McNevin, Department of Surgery, Seattle Children's Hospital, University of Washington, 4800 Sand Point Way NE, Seattle, WA, 98105, USA. kate.mcnevin@seattlechildrens.org.
Lauren N. Nicassio, Department of Surgery, Seattle Children's Hospital, University of Washington, 4800 Sand Point Way NE, Seattle, WA, 98105, USA.
Samuel E. Rice-Townsend, Department of Surgery, Seattle Children's Hospital, University of Washington, 4800 Sand Point Way NE, Seattle, WA, 98105, USA.
Jeffrey R. Avansino, Department of Surgery, Seattle Children's Hospital, University of Washington, 4800 Sand Point Way NE, Seattle, WA, 98105, USA.
Andrea Badillo, Department of Surgery, Children's National Hospital, George Washington University, Washington, DC, USA.
Casey M. Calkins, Department of Surgery, Children's Wisconsin, Medical College of Wisconsin, Milwaukee, WI, USA.
Megan M. Durham, Department of Surgery, Children's + Emory Pediatric Institute, Atlanta, GA, USA.
Rachel Crady, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Ron W. Reeder, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Rebecca M. Rentea, Department of Surgery, Children's Mercy Hospital, University of Missouri-Kansas City, Kansas City, MO, USA.
Michael D. Rollins, Department of Surgery, Primary Children's Hospital, University of Utah, Salt Lake City, UT, USA.
Caitlin A. Smith, Department of Surgery, Seattle Children's Hospital, University of Washington, 4800 Sand Point Way NE, Seattle, WA, 98105, USA.

Document Type

Journal Article

Publication Date

3-7-2025

Journal

Pediatric surgery international

Volume

41

Issue

1

DOI

10.1007/s00383-025-05983-2

Keywords

Patient reported outcomes; Racial disparities; Socioeconomic disparities; Surveys

Abstract

BACKGROUND: Patient-reported outcomes have become an important metric for assessing quality of life and long-term clinical status. The Pediatric Colorectal and Pelvic Learning Consortium (PCPLC) evaluates the quality of life of patients with congenital colorectal diagnoses through the PCPLC Patient (and Parent) Reported Outcome Measures (PROMs) study. We sought to identify how socioeconomic disparities affect the enrollment rates of our patient population in the PROMs study. METHODS: A multicenter, retrospective study of children evaluated at sites participating in the PCPLC PROMs study was performed. We evaluated associations of the participants' demographic information with screening, enrollment, and consent for the PROMs study. RESULTS: Of the 3505 participants enrolled in the PCPLC, 724 patients were eligible for the study. Demographics and enrollment practices varied by site. Hispanic ethnicity (p = 0.015) and public insurance (p = 0.013) were independently associated with lower enrollment, stratifying by site. Race was not independently associated with enrollment. CONCLUSIONS: These results suggest that enrollment of participants into the PROMs study may be preferential for certain demographic groups, regardless of PCPLC site location and independent of demographic composition at each site. Further investigation is needed to develop strategies to ensure equitable screening and enrollment.

APA Citation

McNevin, Kate E.; Nicassio, Lauren N.; Rice-Townsend, Samuel E.; Avansino, Jeffrey R.; Badillo, Andrea; Calkins, Casey M.; Durham, Megan M.; Crady, Rachel; Reeder, Ron W.; Rentea, Rebecca M.; Rollins, Michael D.; and Smith, Caitlin A., "Enrollment disparities in the PCPLC's patient-reported outcome measures (PROMs) study" (2025). GW Authored Works. Paper 6844.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/6844

Department

Surgery