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Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality

Research output: Contribution to journalArticlepeer-review

L Coombes, K Bristowe, C Ellis-Smith, J Aworinde, L K Fraser, J Downing, M Bluebond-Langner, L Chambers, F E M Murtagh, R Harding

Original languageEnglish
Pages (from-to)1803-1832
Number of pages30
JournalQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Volume30
Issue number7
Early online date18 Mar 2021
DOIs
Accepted/In press3 Mar 2021
E-pub ahead of print18 Mar 2021
PublishedJul 2021

Bibliographical note

Funding Information: We thank the European Research Council for the financial?support needed to undertake this study. The Children?s Palliative?care?Outcome?Scale (CPOS) Study Steering Group members are:?Anna-Karenia?Anderson, Lydia Bates, Debbie?Braybrook, Rachel Burman, Alan Craft,?Finella?Craig, Julia Downing, Sara?Fovargue,?Bobbie?Farsides, Lorna Fraser, Ann Goldman, Jane Green, Ping Guo, Richard?Harding, Irene Higginson, Michelle Hills, Gill Hughes, Joanna?Laddie, Angela Logun, Steve?Marshall, Linda Maynard, Renee McCulloch, Eve?Namisango, Susan?Picton, Anna Roach, Gao Wei. Publisher Copyright: © 2021, The Author(s). Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

King's Authors

Abstract

Introduction: Self-report is the gold standard for measuring children’s health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people < 19 years to participate in valid and reliable self-reporting of their health outcomes. Method: PsycInfo, Medline, CINAHL and Embase were searched from 1 January 1990 to 15 March 2020, and citation searching undertaken in Scopus. Articles were included if they were primary research or case reports of ≥ 3 participants reporting the following: recall period, response scale selection, administration modality. Quality was assessed using QualSyst, and results synthesised narratively. This review was conducted and reported according to PRISMA guidelines. Results: 81 of 13,215 retrieved articles met the inclusion criteria. Children < 5 years old cannot validly and reliably self-report health outcomes. Face scales demonstrate better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity. Children prefer computerised measures. Children ≤ 7 years old think dichotomously so need two response options. Those > 8 years old can reliably use a 3-point scale. Conclusion: The results of this review have both clinical and research implications. They can be used to inform appropriate choice of PROM for use with CYP in the clinical setting. We also give eight recommendations for future development of self-reported outcome measures for children and young people.

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