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A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research:
Olivia K C Spivack1,2, Michaela Dellenmark-Blom2,3,4,5, Jens Dingemann2,6
1Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
Insights
Patient-reported outcome measures (PROMs) are underutilized in pediatric surgical research. Future research should focus on developing and implementing robust PROMs, assessing their impact, and covering a wider range of conditions.
Area of Science:
- Pediatric Surgery
- Health Outcomes Research
Background:
- Patient-reported outcome measures (PROMs) are crucial for understanding patient-centered outcomes in pediatric surgery.
- This review examines the use and development of PROMs in recent pediatric surgical research.
Approach:
- A systematic literature search identified articles from 2021-2023 on PROM use in specific pediatric surgical conditions.
- Articles were analyzed for PROM application objectives, and psychometrically robust PROMs were identified and described.
Key Points:
- 49 articles met inclusion criteria, with a focus on esophageal atresia and Hirschsprung's disease.
- Twelve of 29 identified PROMs were psychometrically robust, with seven developed using patient input.
- Most PROMs advanced condition understanding, with limited development and evaluation.
Conclusions:
- Significant gaps exist in the application of PROMs in pediatric surgical research.
- There is a need for developing and utilizing psychometrically robust PROMs, expanding disease coverage, and assessing implementation strategies.
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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