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; Michaela Dellenmark-Blom; Jens Dingemann; Chantal A. ten Kate; Vuokko Wallace; Wichor M. Bramer; Julia H. Quitmann; Andre Rietman

doi:10.1055/s-0043-1778108

European Journal of Pediatric Surgery, Table of Contents

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 ^*

¹Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

,

Michaela Dellenmark-Blom^*

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

³Department of Pediatrics, University of Gothenburg Institute of Clinical Sciences, Gothenburg, Sweden

⁴Department of Pediatric Surgery, Sahlgrenska University Hospital Queen Silvia Children's Hospital, Gothenburg, Sweden

⁵Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden

,

Jens Dingemann

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

⁶Department of Pediatric Surgery, Hannover Medical School, Hannover, Niedersachsen, Germany

,

Chantal A. ten Kate

¹Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands

,

Vuokko Wallace

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

⁷EAT (Esophageal Atresia Global Support Groups), Stuttgart, Germany

⁸Department of Psychology, University of Bath, Bath, United Kingdom

,

Wichor M. Bramer

⁹Medical Library, Erasmus Medical Center, Rotterdam, the Netherlands

,

Julia H. Quitmann

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

¹⁰Faculty of Business and Social Sciences, Hamburg University of Applied Sciences (HAW Hamburg), Hamburg, Germany

,

Andre Rietman

¹Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands

²Quality of Life working group, European Reference Network for rare Inherited Congenital Anomalies (ERNICA)

¹¹Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands

› Author Affiliations

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

Full Text

References

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Supplementary Material

Supplementary Material