Astrid Janssens1, Jo Thompson Coon2, Morwenna Rogers2, Karen Allen2, Colin Green2, Crispin Jenkinson3, Alan Tennant4, Stuart Logan2, Christopher Morris2. 1. Peninsula Cerebra Research Unit & NIHR PenCLAHRC, University of Exeter Medical School, University of Exeter, Exeter, UK. Electronic address: a.janssens@exeter.ac.uk. 2. Peninsula Cerebra Research Unit & NIHR PenCLAHRC, University of Exeter Medical School, University of Exeter, Exeter, UK. 3. Nuffield Department of Population Health, University of Oxford, Oxford, UK. 4. Department of Rehabilitation Medicine, University of Leeds, Leeds, UK.
Abstract
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.
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.
Authors: Christopher Morris; Astrid Janssens; Valerie Shilling; Amanda Allard; Andrew Fellowes; Richard Tomlinson; Jane Williams; Jo Thompson Coon; Morwenna Rogers; Bryony Beresford; Colin Green; Crispin Jenkinson; Alan Tennant; Stuart Logan Journal: Health Qual Life Outcomes Date: 2015-06-25 Impact factor: 3.186
Authors: Mimmi Åström; Carina Persson; Margareta Lindén-Boström; Ola Rolfson; Kristina Burström Journal: Qual Life Res Date: 2018-09-08 Impact factor: 3.440
Authors: Astrid Janssens; Morwenna Rogers; Rebecca Gumm; Crispin Jenkinson; Alan Tennant; Stuart Logan; Christopher Morris Journal: Dev Med Child Neurol Date: 2015-12-11 Impact factor: 5.449