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Review
. 2024 Apr;34(2):143-161.
doi: 10.1055/s-0043-1778108. Epub 2024 Jan 25.

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   2 , Michaela Dellenmark-Blom  2   3   4   5 , Jens Dingemann  2   6 , Chantal A Ten Kate  1 , Vuokko Wallace  2   7   8 , Wichor M Bramer  9 , Julia H Quitmann  2   10 , Andre Rietman  1   2   11
Affiliations
Review

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 et al. Eur J Pediatr Surg. 2024 Apr.

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.

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Conflict of interest statement

None declared.

Figures

Fig. 1
Fig. 1
PROM identification process.
Fig. 2
Fig. 2
The number of articles employing the identified PROMs, categorized per condition.
See this image and copyright information in PMC

References

    1. Dingemann J, Dellenmark-Blom M, Quitmann J H. Health-related quality of life in pediatric surgical patients and their caretakers. Eur J Pediatr Surg. 2020;30(03):223–224. - PubMed
    1. Bloemeke J, Witt S, Bullinger M, Dingemann J, Dellenmark-Blom M, Quitmann J. Health-related quality of life assessment in children and their families: aspects of importance to the pediatric surgeon. Eur J Pediatr Surg. 2020;30(03):232–238. - PubMed
    1. Coi A, Santoro M, Pierini A et al.Survival of children with rare structural congenital anomalies: a multi-registry cohort study. Orphanet J Rare Dis. 2022;17(01):142. - PMC - PubMed
    1. Uecker M, Ure B, Quitmann J H, Dingemann J. Need for transition medicine in pediatric surgery - health related quality of life in adolescents and young adults with congenital malformations. Innov Surg Sci. 2022;6(04):151–160. - PMC - PubMed
    1. Glinianaia S V, Morris J K, Best K E et al.Long-term survival of children born with congenital anomalies: a systematic review and meta-analysis of population-based studies. PLoS Med. 2020;17(09):e1003356. - PMC - PubMed