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A systematic review of generic multidimensional patient-reported outcome measures for children, part I: descriptive
Astrid Janssens1, Jo Thompson Coon1, Morwenna Rogers1
1Peninsula Cerebra Research Unit & NIHR PenCLAHRC, University of Exeter Medical School, University of Exeter, Exeter, UK.
Insights
Researchers identified 35 patient-reported outcome measures (PROMs) for children, finding most assess social functioning but few cover all age ranges or fully align with the ICF-CY framework.
Area of Science:
- Pediatrics
- Health Outcomes Research
- Rehabilitation
Background:
- Patient-reported outcome measures (PROMs) are crucial for assessing children's health.
- A comprehensive understanding of available PROMs for pediatric populations is needed.
- The International Classification of Functioning, Disability and Health Children and Youth version (ICF-CY) provides a standardized framework for describing health and functioning.
Purpose of the Study:
- To identify generic, multidimensional PROMs for children up to 18 years old.
- To characterize the content of these PROMs using the ICF-CY framework.
- To evaluate the suitability of PROMs across different age ranges within pediatrics.
Main Methods:
- A systematic literature search was conducted across multiple databases, including specialized PROM databases.
- Search terms focused on measures, health, children, and psychometric properties.
- Two independent reviewers screened abstracts, collected descriptive data, and mapped PROM content to ICF-CY chapters.
Main Results:
- 35 PROMs were identified, with 29 being generic and 6 preference-based.
- Social functioning was the most frequently assessed aspect across the PROMs.
- Significant variation exists in the health aspects covered and the focus on functioning versus well-being.
Conclusions:
- A wide array of pediatric PROMs exists, but few are applicable across the entire 0-18 age spectrum.
- Most identified PROMs do not cover all major domains outlined by the ICF-CY.
- Existing PROMs often combine aspects of functioning and well-being within their scales, limiting distinct measurement.
Objectives:
To identify generic, multidimensional patient-reported outcome measures (PROMs) for children up to 18 years old and describe their characteristics and content assessed using the International Classification of Functioning, Disability and Health Children and Youth version (ICF-CY).
Methods:
The search strategy, developed by an information specialist, included four groups of terms related to "measure," "health," "children and young people," and "psychometric performance." The search was limited to publications from 1992. Five electronic databases and two online-specific PROM databases were searched. Two groups of reviewers independently screened all abstracts for eligible PROMs. Descriptive characteristics of the eligible PROMs were collected, and items and domains of each questionnaire were mapped onto the ICF-CY chapters.
Results:
We identified 35 PROMs, of which 29 were generic PROMs and 6 were preference-based measures. Many PROMs cover a range of aspects of health; however, social functioning is represented most often. Content covered differs both in which aspects of health are assessed and whether individual questions focus on functioning (what the subject can or does do) and/or well-being (how the subject feels about a certain aspect of his or her health).
Conclusions:
A broad variety of PROMs is available to assess children's health. Nevertheless, only a few PROMs can be used across all age ranges to 18 years. When mapping their content on the ICF-CY, it seems that most PROMs exclude at least one major domain, and all conflate aspects of functioning and well-being in the scales.
