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.

IMPLICATIONS FOR REHABILITATION

• Identifies seven participation-focused measures which are available for young people with cerebral palsy, all seven measure Attendance and three measure Involvement.

• Provides a decision-making tool to assist clinicians and researchers with the selection of participation-focused measures for young people with cerebral palsy.

• Recommends that more accessible self-report measures are needed which capture age-appropriate participation of young people with cerebral palsy.

Keywords:

• Cerebral palsy
• participation
• measures
• young people
• youth
• communication

Acknowledgements

Participation measures accessed for the purpose of this review were retrieved by either accessing them online or by contacting the measure authors for access to the measure.

The SEAS measure was accessed under license from Holland Bloorview Kids Rehabilitation Hospital, Toronto. The access of the PEM-CY measure (authored by W. Coster, M. Law, and G. Bedell) and the APS measure (authored by H. Bourke-Taylor, M. Law, L. Howie, and J.F. Pallant) were under license from McMaster University.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Investigator JQ was supported by an Australian Commonwealth Research Training Program (RTP) scholarship; Choice, Passion, Life [PhD top-up scholarship].