Measuring participation for children and youth with power mobility needs: a systematic review of potential health measurement tools

The objective of this study was to identify and critically appraise potential participation measurement tools for children aged 18 months to 17 years with power mobility (PM) needs. Searches in nine electronic databases identified peer-reviewed publications in English to January 2015, along with hand-searching included bibliographies. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement was followed with inclusion criteria set a priori. Keywords and subject headings included participation and measurement terms with descriptors of young people who are potential PM candidates. Publications describing measurement properties of English language tools were included if the items included > 85% content related to participation and described at least two participation dimensions. Two reviewers reached consensus after independently screening titles and abstracts, identifying full-text articles meeting criteria, extracting data, and conducting quality ratings. Tool descriptions, clinical utility and measurement properties were extracted. Study quality and measurement properties were evaluated using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist and McMaster Outcome Measure Rating Form. Of 1330 titles identified, 138 peer-reviewed publications met study inclusion criteria. Fifty tools were identified while 20 tools met inclusion criteria. Evidence supporting reliability and validity varied considerably. Two tools had responsiveness evidence, an important measurement property when evaluating change. Quality ratings were strongest for internal consistency and content validity. Ratings were downgraded due to small sample sizes, and limited description of missing data or study conditions.

While potential tools emerged (Assessment of Preschool Children’s Participation, Preference for Activities of Children, Child and Adolescent Scale of Participation, Child Engagement in Daily Life, Canadian Occupational Performance Measure and Questionnaire of Young People’s Participation), none were judged best suited for use with children having PM needs. Further empirical studies with this population are needed before recommending use for PM applications.