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Equivalence of Paper and Electronic-Based Patient Reported Outcome Measures for Children: A Systematic Review
Simone Kortbeek1,2, Arti Pawaria3, Vicky Lee Ng1,2
1From the Division of Gastroenterology, Hepatology and Nutrition, Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Insights
Electronic patient-reported outcome measures (e-PROMs) are equivalent to paper versions for pediatric gastrointestinal disorders. However, research on proxy e-PROMs and their use in specific pediatric populations remains limited.
Area of Science:
- Pediatric Gastroenterology
- Health Outcomes Research
- Digital Health
Background:
- Patient-reported outcome measures (PROMs) are crucial for assessing chronic pediatric gastrointestinal disorders.
- Electronic PROMs (e-PROMs) offer enhanced accessibility compared to traditional paper formats.
- Measurement equivalence (ME) ensures psychometric comparability between original and adapted PROM versions, including proxy versions unique to pediatrics.
Approach:
- A systematic review evaluated the literature on ME of e-versions adapted from pediatric paper-based PROMs.
- Searches were conducted across major databases (Medline, Embase, APA PsychInfo, Cochrane Library).
- Two independent reviewers assessed titles, abstracts, and manuscripts against pre-defined criteria.
Key Points:
- 19 studies met the criteria, with over half focusing on disease-specific PROMs.
- All 19 studies reported ME between paper and e-PROM versions across 5653 pediatric participants.
- Crucially, only 6 studies (31.6%) assessed ME for proxy-reported e-versions.
Conclusions:
- Electronic PROMs demonstrate measurement equivalence to paper versions in pediatric gastrointestinal studies.
- There is a significant gap in research evaluating proxy e-PROMs, particularly for specific pediatric conditions like inflammatory bowel disease.
- Pediatric gastroenterologists can expand their clinical and research tools by incorporating validated e-PROMs.
Abstract:
Patient-reported outcome measures (PROMs) exist for a variety of chronic gastrointestinal disorders in children. The availability of electronic (e-)formats of PROMs enhance the accessibility of these tools. The International Society for Pharmacoeconomic and Outcomes Research (ISPOR) defines measurement equivalence (ME) as "comparability of the psychometric properties of data" obtained from the administration of original and adapted versions of PROMs. Consideration of proxy PROM versions is unique to pediatrics and must be included in ME evaluations. We conducted a systematic review (SR) of the literature evaluating ME of e-versions adapted from pediatric paper-based PROMs. A literature search was conducted through Medline, Embase, APA PsychInfo, and the Cochrane Library. Titles, abstracts, and manuscripts were reviewed by 2 independent reviewers. The search yielded 19 studies meeting pre-defined criteria. Just over half (52.6%) of 19 PROMs were disease-specific ones. ME between paper- and e-PROM versions was reported as present in all 19 studies evaluating 5653 participants under the age of 18 years. However, only 6 (31.6%) studies evaluated ME in proxy reported e-versions. Despite the use of PROMs for children with a variety of chronic gastrointestinal disorders, only 1 study evaluated a PROM in this population (IMPACT III for inflammatory bowel disease). Findings from this SR highlight strategic opportunities for the pediatric gastroenterologist to broaden the clinical and research armamentarium to include e-PROMs.
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