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CC BY 4.0 · Eur J Pediatr Surg 2024; 34(02): 143-161
DOI: 10.1055/s-0043-1778108
Review Article

A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field

Olivia K.C. Spivack    *
1   Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
,
Michaela Dellenmark-Blom   *
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
3   Department of Pediatrics, University of Gothenburg Institute of Clinical Sciences, Gothenburg, Sweden
4   Department of Pediatric Surgery, Sahlgrenska University Hospital Queen Silvia Children's Hospital, Gothenburg, Sweden
5   Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden
,
Jens Dingemann 
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
6   Department of Pediatric Surgery, Hannover Medical School, Hannover, Niedersachsen, Germany
,
Chantal A. ten Kate
1   Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands
,
Vuokko Wallace
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
7   EAT (Esophageal Atresia Global Support Groups), Stuttgart, Germany
8   Department of Psychology, University of Bath, Bath, United Kingdom
,
Wichor M. Bramer
9   Medical Library, Erasmus Medical Center, Rotterdam, the Netherlands
,
Julia H. Quitmann
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
10   Faculty of Business and Social Sciences, Hamburg University of Applied Sciences (HAW Hamburg), Hamburg, Germany
,
Andre Rietman
1   Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands
2   Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)
11   Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands
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Abstract

Introduction Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research.

Materials and Methods A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described.

Results Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study.

Conclusions This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.

Keywords

patient outcomes - children - congenital anomalies - health status - quality of life

* These authors contributed equally and share the first authorship.


Supplementary Material



Publication History

Received: 06 November 2023

Accepted: 07 November 2023

Article published online:
25 January 2024

© 2024. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

Georg Thieme Verlag KG
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