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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. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

This study explored the home-based participation of young people with cerebral palsy (CP) and described factors that make participation easier or harder. Fifteen young people with CP aged 15 to 26 years provided written reflections, photographs, or videos about their home-based participation experiences. Data were analyzed using reflexive thematic analysis. Self-reported reflections were grouped inductively into 129 codes, then 20 subthemes and 5 themes which emphasized CP characteristics, thoughts, emotions, equipment, environment, supports, and inclusion as important factors influencing home-based participation. Young people with CP largely described the home environment as an inclusive place to participate. [ABSTRACT FROM AUTHOR]

To identify specific factors influencing the participation experiences of young people with cerebral palsy (CP) aged 15 to 26 years. A three-round Delphi survey study design was used. Consumers (young people with CP and caregivers) and health professionals were asked to generate and then rate items influencing positive and negative participation experiences. Qualitative content analysis and descriptive statistics were used to classify items across the family of Participation-Related Constructs (fPRC) framework. Sixty-eight participants completed Round I (25 consumers, 43 health professionals). Round II resulted in a consensus for all but two items, with Round III not required. The fPRC construct with the most items rated as extremely important for positive participation experiences was Environment–Availability, and for negative participation, experiences were Environment-Acceptability for both adolescents and young adults. A consensus was reached on the most important items influencing the positive and negative participation experiences of young people with CP. These items should be prioritised when developing support services and allocating funding to improve the participation experiences of young people with CP. This study is reporting consumer and professional consensus on the factors promoting positive and negative participation for young people with cerebral palsy. Ensuring availability of appropriate activities and services is extremely important for enabling positive participation experiences. Promoting acceptable attitudes of others is extremely important for alleviating negative participation experiences. [ABSTRACT FROM AUTHOR]

To identify and assess the clinimetric properties of psychological, cognitive, and social competence assessment tools relevant to physical activity for school-aged children (5–17 years) with neurodevelopmental disabilities. Seven electronic databases were searched. Study findings and methodologies were evaluated using the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist. Psychometric strength of assessment tools was determined using Grading of Recommendations Assessment, Development and Evaluation principles (GRADE) (Trial registration: CRD42020180616). Study criteria were met by eight subscales from the BRIEF2, DMQ17, QI-Disability, SAID, and SDQ. Most subscales examined psychological competence (n = 5), with fewer addressing social competence (n = 2), or cognitive competence (n = 1). Validity was moderate to high strength for most subscales. Reliability was of moderate and unclear strength for two subscales. A five-level decision tree was devised to summarise: (1) physical literacy domains/elements, (2) populations, (3) assessment focus, (4) required resources, and (5) psychometric evidence. Subscales are available to assess psychological, cognitive, or social competence. For school-aged children with neurodevelopmental disabilities, these have moderate to high strength psychometric support. A decision tree will assist practitioners in subscale selection. Future studies are needed to establish gold standard assessment of physical literacy for this population. Psychological Activity Competence can be measured for children with neurodevelopmental disabilities, subscales from The Behaviour Rating Inventory of Executive Function, Second Edition (BRIEF2; The Dimensions of Mastery Questionnaire 17.0 (DMQ17); and The Quality of Life Inventory-Disability (QI-Disability). Cognitive Activity Competence can be measured using a subscale from The Scale of Attention in Intellectual Disability (SAID). Social Activity Competence can be measured using subscales from the BRIEF2, and The Strengths and Difficulties Questionnaire (SDQ). Clinicians can use the Physical Literacy decision tree to guide selection of these tools. [ABSTRACT FROM AUTHOR]

Evaluate reproducibility of hypermobility assessments using in-person versus telehealth modes. Hypermobility of 20 children (7–12 years) was evaluated using the Beighton Score, Upper Limb Hypermobility Assessment Tool (ULHAT), and Lower Limb Assessment Score (LLAS) via in-person and telehealth modes. Agreement between the two modes was examined using percentage of exact agreement (%EA and %EA ± 2), Limits of Agreement (LoA) and Smallest detectable change (SDC). Reliability was calculated using intra-class correlation coefficients (ICCs). Agreement between modes for total Scores was best for the Beighton (%EA = fair, %EA ± 2 = good), then the ULHAT (%EA = poor, %EA ± 2 = excellent), and LLAS (%EA = poor, %EA ± 2 = fair). Total scores for all scales showed wide LoA, large SDC (25-31%), and fair to good reliability (ICC = 0.54–0.61). Exact agreement for Generalized Joint Hypermobility classification was excellent for the Beighton (≥7/9 threshold) and fair for the ULHAT and LLAS (≥7/12 threshold). Percentage of individual test items with good/excellent agreement was highest for the Beighton (78%, 7/9 items), then the ULHAT (58%, 14/24) and LLAS (42%, 10/24). Total Scores of hypermobility scales showed low exact agreement between in-person and telehealth, but fair–excellent agreement within two points. Classification using the Beighton ≥7/9 threshold was excellent. Research is recommended to increase accuracy of online assessments. [ABSTRACT FROM AUTHOR]

Aim: Achondroplasia is characterized by delays in the development of communication and motor skills. While previously reported developmental profiles exist across gross motor, fine motor, feeding, and communication skills, there has been no prospective study of development across multiple areas simultaneously. Method: This Australasian population-based study utilized a prospective questionnaire to quantify developmental data for skills in children born from 2000 to 2009. Forty-eight families from Australia and New Zealand were asked to report every 3 months on their child's attainment of 41 milestones. Results include reference to previously available prospective information. Results: Information from questionnaires was used to develop an achondroplasia-specific developmental recording form. The 25th, 50th, 75th, and 90th centiles were plotted to offer clear guidelines for development across gross motor, fine motor, feeding, and communication skills in children with achondroplasia. Interpretations: Consistent with results from previous research, children with achondroplasia are delayed in development of gross motor and ambulatory skills. Young children with achondroplasia demonstrate a number of unique movement strategies that appear compensatory for the biomechanical changes. While delays were seen in development of later communication items, there were fewer delays seen across development of early communication, fine motor, and feeding skills.

This systematic review evaluates the validity, reliability, and clinical utility of outcome measures used to assess self-care skills among children with congenital musculoskeletal conditions and assesses the applicability of these measures for children with osteochondrodysplasia aged 0-12 years. Electronic databases were searched to identify self-care assessments that addressed the self-care domain as defined by of the International Classification of Function Disability and included children with osteochondrodysplasia. Ten measures were identified and three met the inclusion criteria: the Functional Independence Measure for Children (WeeFIM), the Activities Scale for Kids (ASK), and the Pediatric Evaluation of Disability Inventory (PEDI). Although psychometric data specific to children with osteochondrodysplasia are limited, adequate to excellent reliability and evidence of validity were reported for all three instruments for children with physical disabilities. Further evaluation of psychometric properties of self-care instruments specifically for children with osteochondrodysplasia would be beneficial to help identify instruments that will assist with improved assessment and management. (Contains 4 tables.)

Evaluate the validity of the Clinical Test of Sensory Integration of Balance (CTSIB) scored using Kids-Balance Evaluation Systems Test (Kids-BESTest) criteria compared to laboratory measures of postural control. Participants were 58 children, 7–18 years, 17 with ambulant cerebral palsy (CP) (GMFCS I–II), and 41 typically developing (TD). Postural control in standing was assessed using CTSIB items firm and foam surfaces, eyes open (EO) then closed (EC). Face validity was evaluated comparing clinical Kids-BESTest scores between groups. Correlating force plate centre-of-pressure (CoP) data and clinical scores allowed evaluation of concurrent and content validity. Face validity: TD children scored higher for all CTSIB conditions when compared to children with CP. Concurrent validity: the agreement between clinical and CoP derived scores was poor to excellent (Firm-EO = 76%, Firm-EC = 76%, Foam-EO = 59%, Foam-EC = 94%). Clinical scores of "2-unstable" and "3-stable" were not distinguished reliably by force plate measures. Content validity: significant correlations were found between clinical scores and CoP data for the two intermediate conditions (Firm-EC: rs −0.40 to −0.72; Foam-EO: rs −0.12 to −0.50), but not the easier (Firm-EO: rs −0.41 to −0.36) or harder conditions (Foam-EC: rs −0.25 to −0.27). Face validity of Kids-BESTest CTSIB criteria was supported. Content and concurrent validity were partially supported. Improved Kids-BESTest scoring terms were recommended to describe postural characteristics of "2-unstable." Face validity of the Kids-BESTest criteria for the CTSIB was confirmed. The Kids-BESTest criteria for the CTSIB can identify children with atypical postural control. Concurrent validity and content validity were partially supported, since children with CP resorted to a range of different balance strategies when "unstable." To improve CTSIB Kids-BESTest criteria, new terms were recommended to better describe postural characteristics of "2-unstable." [ABSTRACT FROM AUTHOR]

Sports participation is an important goal for children with cerebral palsy classified at GMFCS Level I or II, however there are no studies of parent or physiotherapist perspectives on effectiveness or overall acceptability of transition-to-sports interventions. Parent and physiotherapist perspectives of Sports Stars: a novel, practitioner-led, peer-group sports intervention (Trial registration: ACTRN12617000313336) were collected from Sports Stars Session Reports (39 children, 6–12 years, GMFCS I = 11, II = 28, Female = 12), Fidelity Evaluations (28 children), and Perspectives Surveys (Parents = 29, female = 26; Physiotherapists = 8, female = 5). Outcomes were perceived impact on: (1) sports Participation (Attendance, Involvement), (2) sports Activity Competence across Physical, Social, Cognitive and Psychological Physical Literacy domains and (3) overall acceptability. Over 84% of children Attended most sessions. Physiotherapists rated session Involvement as high (median = 3/4). In Session Reports, physiotherapists recorded quantitative improvements in Physical and Cognitive performance and described improvements across all domains. Parents reported improvements across all domains, with comments focusing on Social and Psychological performance. All physiotherapists (8/8) and most parents (26/29) reported a community-based peer-group was the intervention design of choice for sports-focused goals. Parents and physiotherapists perceived Sports Stars, a practitioner-led, peer-group sports intervention, as effective and acceptable for children with cerebral palsy with sports-focussed goals. Parents and physiotherapists agree that Sports Stars improved sports Participation and Physical, Social, Psychological and Cognitive Activity Competence for children with cerebral palsy. Children with sports-focused goals should be offered practitioner-led, peer-group sports interventions in community environments. Therapists should design sports interventions with Physical, Cognitive, Social and Psychological content and outcomes. [ABSTRACT FROM AUTHOR]

To investigate the effectiveness of a practitioner-led, peer-group sports intervention for children with CP at GMFCS Level I–II. Children with CP (GMFCS I–II; 6–12 years) were randomised to Sports Stars or waitlist-control groups. Sports Stars included eight-weeks (eight hours) of physiotherapist-led, sports-specific gross motor activity training, sports education, teamwork development and confidence building. Sports participation was measured using self-identified participation goals (modified Canadian Occupational Performance Measure (mCOPM)). Physical competence was measured with mCOPM activity goals and high-level gross motor batteries (Test of Gross Motor Development (TGMD-2); GMFM-Challenge) and walking (Timed-Up-and-Go), running (Muscle Power Sprint Test; 10x5m Sprint Test), jumping (Standing Broad Jump; Vertical Jump) and throwing (Seated Throw) items. General participation and quality of life were also measured. Outcomes were measured pre, post and 12-weeks post-intervention. Data were analysed using linear mixed models. Fifty-four children were randomised into Sports Stars (n = 29; GMFCS I = 7, II = 22; male = 19; 8.9 ± 2 years) or waitlist-control groups (n = 25; GMFCS I = 10, II = 15; male = 14; 8.6 ± 2 years). The Sports Stars group improved sports participation and activity goals (mCOPM F = 5.49–10.29, p < 0.001) and sports-specific physical competence (TGMD-2, F = 3.45–5.19, p = 0.001–0.009) compared to the waitlist-control. Sports Stars is effective for improving sports-specific participation and physical competence for children with CP. Sports Stars improves performance and satisfaction in sports-specific participation and activity goals for ambulant children with CP. Sports Stars improves sports-specific physical activity competence in locomotor and object control skills. Sport-specific interventions should incorporate sport-specific gross motor activity training as well as sports education, confidence building and teamwork. [ABSTRACT FROM AUTHOR]