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.
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).
ContributorsRachel Knight Lozano, Harriet Shannon, Jonathan Gilby, Sian Goddard, Leanne Turner, Jonathan Marsden
Disease Category: Child health
Disease Name: Cerebral palsy, Respiratory diseases
Age Range: 2 - 18
Sex: Either
Nature of Intervention: Other
- Systematic review of outcomes measured in trials
- Systematic review
A scoping review methodology informed structured searches in nine data-bases, grey literature, and registries, conducted in August 2021 (updated in February 2023). Articles were screened for eligibility by two independent researchers. Any out-come measurement instruments used to assess respiratory health or associated im-pact were extracted, categorized, and mapped to health and health-related domains of the International Classification of Functioning, Disability, and Health