Figures & data
Table 1. Guide to synthesising levels of evidence in psychometric reviews as reported by Schellingerhout et al. [Citation52] and derived from van Tulder et al. [Citation53].
Table 2. Description of participation-focused measures used for young people with cerebral palsy.
Table 3. Participation-focused measures mapped to ICF and fPRC.
Table 4. Levels of evidence for included participation-focused measures reported for young people with CP.
Table 5. Accessibility and inclusion of individuals with communication support needs.
Schellingerhout J, Verhagen A, Heymans MW, et al. Measurement properties of disease-specific questionnaires in patients with neck pain: a systematic review. Qual Life Res. 2012;21(4):659–670. van Tulder MW, Furlan A, Bombardier C, et al. Updated method guidelines for systematic reviews in the cochrane collaboration back review group. Spine. 2003;28(12):1290–1299. Mokkink LB, de Vet HCW, Prinsen CAC, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1171–1179. Bedell GM. Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation. NRE. 2004;19(3):191–205. King G, Law M, King S, et al. Children’s assessment of participation and enjoyment (CAPE) and preferences for activities of children (PAC). Manual San Anotnio (TX): Harcourt Assessment, Inc; 2004. Michelsen SI, Flachs EM, Uldall P, et al. Frequency of participation of 8–12-year-old children with cerebral palsy: a multi-centre cross-sectional European study. Eur J Paediatr Neurol. 2009;13(2):165–177. Coster W, Law M, Bedell G, et al. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil. 2012;34(3):238–246. Gray DB, Hollingsworth HH, Stark SL, et al. Participation survey/mobility: psychometric properties of a measure of participation for people with mobility impairments and limitations. Arch Phys Med Rehabil. 2006;87(2):189–197. Tuffrey C, Bateman BJ, Colver AC. The questionnaire of young people’s participation (QYPP): a new measure of participation frequency for disabled young people. Child Care Health Dev. 2013;39(4):500–511. King G, Batorowicz B, Rigby P, et al. Development of a measure to assess youth self-reported experiences of activity settings (SEAS). Int J Disabil Dev Educ. 2014;61(1):44–66. Bedell G. Further validation of the child and adolescent scale of participation (CASP). Dev Neurorehabil. 2009;12(5):342–351. McDougall J, Bedell G, Wright V. The youth report version of the child and adolescent scale of participation (CASP): assessment of psychometric properties and comparison with parent report. Child Care Health Dev. 2013;39(4):512–522. Cleary SL, Taylor NF, Dodd KJ, et al. An aerobic exercise program for young people with cerebral palsy in specialist schools: a phase I randomized controlled trial. Dev Neurorehabil. 2017;20(6):331–338. Imms C, Adair B. Participation trajectories: impact of school transitions on children and adolescents with cerebral palsy. Dev Med Child Neurol. 2017;59(2):174–182. Kang LJ, Palisano RJ, Orlin MN, et al. Determinants of social participation-with friends and others who are not family members-for youths with cerebral palsy. Phys Ther. 2010;90(12):1743–1757. Kang LJ, Palisano RJ, King GA, et al. Social participation of youths with cerebral palsy differed based on their self-perceived competence as a friend. Child Care Health Dev. 2012;38(1):117–127. King GA, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child Care Health Dev. 2007;33(1):28–39. King G, Imms C, Palisano R, et al. Geographical patterns in the recreation and leisure participation of children and youth with cerebral palsy: a CAPE international collaborative network study. Dev Neurorehabil. 2013;16(3):196–206. King G, Batorowicz B, Rigby P, et al. The leisure activity settings and experiences of youth with severe disabilities. Dev Neurorehabil. 2014;17(4):259–269. Palisano RJ, Kang LJ, Chiarello LA, et al. Social and community participation of children and youth with cerebral palsy is associated with age and gross motor function classification. Phys Ther. 2009;89(12):1304–1314. Palisano RJ, Orlin M, Chiarello LA, et al. Determinants of intensity of participation in leisure and recreational activities by youth with cerebral palsy. Arch Phys Med Rehabil. 2011;92(9):1468–1476. Shikako-Thomas K, Shevell M, Schmitz N, et al. Determinants of participation in leisure activities among adolescents with cerebral palsy. Res Dev Disabil. 2013;34(9):2621–2634. Shikako-Thomas K, Shevell M, Lach L, et al. Are you doing what you want to do? Leisure preferences of adolescents with cerebral palsy. Dev Neurorehabil. 2015;18(4):234–240. Shikako-Thomas K, Shevell M, Lach L, et al. Picture me playing-a portrait of participation and enjoyment of leisure activities in adolescents with cerebral palsy. Res Dev Disabil. 2013;34(3):1001–1010. Boyer ER, Stout JL, Laine JC, et al. Long-term outcomes of distal femoral extension osteotomy and patellar tendon advancement in individuals with cerebral palsy. J Bone Joint Surg Am. 2018;100(1):31–41. Munger ME, Aldahondo N, Krach LE, et al. Long-term outcomes after selective dorsal rhizotomy: a retrospective matched cohort study. Dev Med Child Neurol. 2017;59(11):1196–1203. Armstrong EL, Boyd RN, Horan SA, et al. Functional electrical stimulation cycling, goal-directed training, and adapted cycling for children with cerebral palsy: a randomized controlled trial. Dev Med Child Neurol. 2020;62(12):1406–1413. Bedell G, Coster W, Law M, et al. Community participation, supports, and barriers of school-age children with and without disabilities. Arch Phys Med Rehabil. 2013;94(2):315–323. Coster W, Bedell G, Law M, et al. Psychometric evaluation of the participation and environment measure for children and youth. Dev Med Child Neurol. 2011;53(11):1030–1037. Khetani M, Marley J, Baker M, et al. Validity of the participation and environment measure for children and youth (PEM-CY) for health impact assessment (HIA) in sustainable development projects. Disabil Health J. 2014;7(2):226–235. Mitchell LE, Ziviani J, Boyd RN. Characteristics associated with physical activity among independently ambulant children and adolescents with unilateral cerebral palsy. Dev Med Child Neurol. 2015;57(2):167–174. Zeidan J, Joseph L, Camden C, et al. Look around me: environmental and socio-economic factors related to community participation for children with cerebral palsy in québec. Phys Occup Ther Pediatr. 2020;41(4):1–18. Michelsen SI, Flachs EM, Damsgaard MT, et al. European study of frequency of participation of adolescents with and without cerebral palsy. Eur J Paediatr Neurol. 2014;18(3):282–294. Batorowicz B, King G, Vane F, et al. Exploring validation of a graphic symbol questionnaire to measure participation experiences of youth in activity settings. Augment Altern Commun. 2017;33(2):97–109.