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Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review

Knight Lozano, Rachel; Shannon, Harriet; Gilby, Jonathan; Goddard, Sian; Turner, Leanne; Marsden, Jonathan; (2024) Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review. Developmental Medicine & Child Neurology 10.1111/dmcn.15854. (In press). Green open access

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Abstract

Aim: To identify, map, and describe outcome measurement domains and instruments used within a community setting to assess respiratory health in children and young people aged 1 to 18 years, diagnosed with cerebral palsy (CP). Method: A scoping review methodology informed structured searches in nine databases, grey literature, and registries, conducted in August 2021 (updated in February 2023). Articles were screened for eligibility by two independent researchers. Any outcome measurement instruments used to assess respiratory health or associated impact were extracted, categorized, and mapped to health and health-related domains of the International Classification of Functioning, Disability, and Health. Results: Seventy-six outcome measurement instruments were identified across 78 articles worldwide between 1970 and 2023. These were categorized into ‘Body functions and structures’ (n = 20), ‘Activity and performance’ (n = 22), and ‘Participation and quality of life’ (n = 19), with a further 15 mapped to ‘Health care resources use’. Interpretation: No consensus of ‘what’ to measure and ‘how’ to measure respiratory health in children and young people with CP was found. Moreover, many measures were not replicable in individuals with more severe forms of CP, excluding those at increased risk of respiratory-related morbidity and mortality. Further research is required to agree important outcome domains and associated measures in research and clinical practice.

Type: Article
Title: Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/dmcn.15854
Publisher version: http://dx.doi.org/10.1111/dmcn.15854
Language: English
Additional information: © 2024 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Infection, Immunity and Inflammation Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10187875
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