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.
What This Paper Adds: A limited number and size of experimental designs were found. Seventy-six measures were identified to assess respiratory health in cerebral palsy. No consensus was found in 'what' or 'how' to measure respiratory health. Many measures were not replicable in children and young people at risk of poorer respiratory health outcomes. Children and young people with comorbidities and learning disability were frequently excluded from studies.
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