Measurement properties of instruments that assess participation in young people with autism spectrum disorder: a systematic review

AimTo systematically review the measurement properties of instruments assessing participation in young people with autism spectrum disorder (ASD). MethodA search was performed in MEDLINE, PsycINFO, and PubMed combining three constructs (ASD', test of participation', measurement properties'). Results were restricted to articles including people aged 6 to 29 years. The 2539 identified articles were independently screened by two reviewers. For the included articles, data were extracted using standard forms and their risk of bias was assessed. ResultsNine studies (8 cross-sectional) met the inclusion criteria, providing information on seven different instruments. The total sample included 634 participants, with sex available for 600 (males=494; females=106) and age available for 570, with mean age for these participants 140.58 months (SD=9.11; range=36-624). Included instruments were the school function assessment, vocational index, children's assessment of participation and enjoyment/preferences for activities of children, experience sampling method, Pediatric Evaluation of Disability Inventory, Computer Adaptive Test, adolescent and young adult activity card sort, and Patient-Reported Outcomes Measurement Information System parent-proxy peer relationships. Seven studies assessed reliability and validity; good properties were reported for half of the instruments considered. Most studies (n=6) had high risk of bias. Overall the quality of the evidence for each tool was limited. InterpretationValidation of these instruments, or others that comprehensively assess participation, is needed. Future studies should follow recommended methodological standards.