Participation measures that evaluate attendance and involvement for young people aged 15 to 25 years with cerebral palsy: a systematic review

Abstract

Purpose: To identify participation-focused measures used for young people with cerebral palsy (CP), evaluate their psychometric evidence, and map item content to the International Classification of Functioning, Disability, and Health (ICF), and family of Participation-Related Constructs (fPRC) frameworks.

Methods: Four databases (PubMed, Embase, Web of Science, CINAHL) were searched for papers that involved young people with CP aged 15 to 25 years and reported original data from a participation measure. Each measure was examined for validity, reliability, responsiveness (using the COSMIN checklist), clinical utility, the inclusion of accessible design features, self- and/or proxy-report from people with communication support needs, and item content according to ICF and fPRC.

Results: Of 895 papers, 80 were included for review. From these, 26 measures were identified. Seven measures (27 papers/resources) were participation-focused, capable of producing a score for participation Attendance and/or Involvement. Of these, all measured Attendance (n = 7) but fewer than half measured Involvement (n = 3). Few included studies (37%) reported including some self-report of people with communication support needs.

Conclusions: Participation measures for young people with CP are evolving but require more: (i) emphasis on measurement of involvement; (ii) investigation of psychometric properties; and (iii) adaptation to enable self-report by young people with communication support needs.

Keywords: Cerebral palsy; communication; measures; participation; young people; youth.