Reflections on Participation at Home, As Self-Reported by Young People with Cerebral Palsy.

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.

Child-led goal setting and evaluation tools for children with a disability: A scoping review.

AIM: To examine child-led goal setting and evaluation tools and approaches for children with a disability or developmental delay. METHOD: Six databases were searched for studies that included population (children aged less than 18 years with disability or developmental delay); construct (child-led goal setting tool or approach); and context (developmental therapy or rehabilitation). The utility of tools and approaches across the goal setting and evaluation process was investigated using abductive content analysis. RESULTS: Fifty articles met the inclusion criteria. Three approaches and four tools for child-led goal setting and evaluation were identified. No studies reported the clinimetric properties of tools specifically for child self-respondents. Qualitative analysis revealed six distinct goal phases in which tools and approaches were used, which were synthesized into a new framework for child-led goal setting and evaluation titled DECIDE: Direct children to goal setting; Elicit goal topics and priorities; Construct a goal statement; Indicate baseline goal performance; Develop an action plan to address the goal; and Evaluate goal progress after the intervention. INTERPRETATION: Children actively participated in goal setting and evaluation across six DECIDE goal phases. Further clinimetric information is required to support use of goal setting and evaluation tools with child self-respondents. Future research should emphasize the development of multi-phase goal setting tools and approaches for diverse populations of children.

Follow-up echocardiographic changes in children and youth aged <25 years with latent rheumatic heart disease: A systematic review and meta-analysis of global data.

OBJECTIVES: To estimate progression, regression and persistence rates for borderline and mild-definite latent RHD in children and youth diagnosed at age < 25 years. METHODS: A review was conducted in accordance with Preferred Reporting Items for Systematic reviews and Meta-Analysis guidelines. Electronic databases were searched for latent RHD echocardiography follow-up studies which used World Heart Federation diagnostic criteria. A meta-analysis of outcomes was conducted for borderline and mild-definite disease subcategories. RESULTS: Data for 1618 individuals from 12 studies were included. For borderline cases, 48.51% regressed (95%CI 45.10-51.93), 13.99% progressed (95%CI 9.72-18.25), and 38.61% had persistent (unchanged) disease at follow-up (95%CI 29.68-47.54). For mild-definite cases, 34.01% regressed (95%CI 28.88-39.15), 8.06% progressed (95%CI 3.65-16.90), and 60.23% had persistent disease (95%CI 55.08-67.38). CONCLUSIONS: Borderline and mild-definite latent RHD show variable evolution following initial diagnosis. While 8% of mild-definite and 14% borderline cases had signs of disease progression at follow-up, a third of mild-definite and half of borderline cases had disease regression, even with sub adequate antibiotic prophylaxis. The significant variability between study cohorts suggests latent RHD natural history is likely variable between different endemic regions globally. Future research is needed to identify those individuals who would most benefit from antibiotic prophylaxis and determine regional natural history of latent RHD.

Speech and communication classification of children with cerebral palsy: Novice rater agreement and clinical utility.

PURPOSE: To examine novice inter-rater agreement and clinical utility perspectives for speech and communication classification of children with cerebral palsy (CP). METHOD: Twenty-one clinicians (speech-language pathologists [SLPs] n = 11; physiotherapists [PTs] n = 5; occupational therapists [OTs] n = 5) novice to the Viking Speech Scale (VSS), Functional Communication Classification System (FCCS), and Communication Function Classification System (CFCS) rated eight unfamiliar children with CP (8-16 years) following classification orientation. Inter-rater agreement was examined between (a) novices, (b) novice SLPs vs. PTs and OTs, and (c) novice vs. expert (kappa statistics). Utility perceptions were scored regarding classification terminology, ease of use, assistive decision-making resources, and construct validity and were analysed using Kruskal-Wallis H-tests. RESULT: Rating agreement between novices was substantial (VSS, k = 0.72, 95% CI [0.53-0.92]) to moderate (FCCS, k = 0.44, 95% CI [0.23-0.65]; CFCS, k = 0.45, 95% CI [0.18-0.71]), and almost perfect between novice and expert ratings (VSS, kw = 0.89, 95% CI [0.86-0.92]; FCCS, kw = 0.89, 95% CI [0.86-0.92]; CFCS, kw = 0.86, 95% CI [0.82-0.91]). Statistically significant differences, presented highest to lowest, were found for clinical utility: terminology (VSS, FCCS, CFCS; p = 0.02), assistive decision-making resources (FCCS, VSS, CFCS; p = 0.009), and construct validity (FCCS, CFCS, VSS; p < 0.001). CONCLUSION: Novice raters achieved substantial agreement for speech classification, supporting utilisation in clinical, research, and CP register activities. Orientation to communication classification constructs, content, and instructions is recommended for novice raters.

Factors impacting positive and negative participation of young people with cerebral palsy: a Delphi study of consumers and health professionals.

PURPOSE: To identify specific factors influencing the participation experiences of young people with cerebral palsy (CP) aged 15 to 26 years. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Fatigue experienced by people with cerebral palsy: a systematic review of assessment tools and decision tree.

PURPOSE: To conduct a systematic review of self- and proxy-report fatigue assessment tools used in studies of people with cerebral palsy (CP) of all ages, and to develop a fatigue assessment tool decision tree for clinicians and researchers. MATERIALS AND METHODS: Five electronic databases (MEDLINE, PsycInfo, CINAHL, Web of Science and Cochrane) were searched to September 2021 to identify studies assessing self-reported fatigue in people with CP of any age. The assessment tools utilised were extracted and two reviewers appraised the tool characteristics, clinical utility and psychometric properties. A decision tree for selecting fatigue assessment tools was constructed. RESULTS: Ten assessment tools were identified across thirty-nine studies, three of which are valid and reliable for assessing fatigue severity and impact in people with CP. A four-level fatigue assessment tool decision tree was constructed. No valid and reliable tool for assessing cognitive fatigue was identified; responsiveness has not been evaluated in any tool for people with CP. CONCLUSIONS: Physical fatigue screening and assessment tools for people with CP are available and are presented in our decision tree, however their utility as outcome measures remains unclear. Cognitive fatigue is understudied and poorly understood, further work is required in this area.

Current measurement tools to screen and assess physical fatigue in people with cerebral palsy (CP) are valid and reliable and are presented in our 4-level decision tree to guide assessment tool selection.The responsiveness of these measurement tools to screen and assess physical fatigue has not been evaluated, therefore their utility as outcome measures in people with CP is unclear.Cognitive fatigue is understudied and poorly understood in people with CP.Valid and reliable tools to assess cognitive fatigue in people with CP are not available.

Participation measures that evaluate attendance and involvement for young people aged 15 to 25 years with cerebral palsy: a systematic review.

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 REHABILITATIONIdentifies 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.

Measuring psychological, cognitive, and social domains of physical literacy in school-aged children with neurodevelopmental disabilities: a systematic review and decision tree.

PURPOSE: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.IMPLICATIONS FOR REHABILITATIONPsychological 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.

Reproducibility of Hypermobility Assessment Scales for Children When Performed Using Telehealth versus In-Person Modes.

AIMS: Evaluate reproducibility of hypermobility assessments using in-person versus telehealth modes. METHODS: 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). RESULTS: 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). CONCLUSION: 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.

SPORTS STARS: a practitioner-led, peer-group sports intervention for ambulant children with cerebral palsy. Activity and participation outcomes of a randomised controlled trial.

PURPOSE: To investigate the effectiveness of a practitioner-led, peer-group sports intervention for children with CP at GMFCS Level I-II. METHOD: 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. RESULTS: 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. CONCLUSION: Sports Stars is effective for improving sports-specific participation and physical competence for children with CP.Implications for rehabilitationSports 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.

SPORTS STARS: a practitioner-led, peer-group sports intervention for ambulant, school-aged children with cerebral palsy. Parent and physiotherapist perspectives.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.IMPLICATIONS FOR REHABILITATIONParents 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.

Evaluating validity of the Kids-Balance Evaluation Systems Test (Kids-BESTest) Clinical Test of Sensory Integration of Balance (CTSIB) criteria to categorise stance postural control of ambulant children with CP.

PURPOSE: 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. METHOD: 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. RESULTS: 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). CONCLUSION: 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."IMPLICATIONS FOR REHABILITATIONFace 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."

Children with cerebral palsy: A cross-sectional study of their sleep and their caregiver's sleep quality, psychological health and well-being.

BACKGROUND: Children with cerebral palsy (CP) are more likely to experience sleep problems. Their sleep difficulties have been shown to be related to poorer sleep quality for their parents and caregivers. While poor sleep has been linked with poorer psychological health in other populations, few studies have focused on the potential effects of children's and caregivers' sleep disturbance on caregivers' psychological health and well-being in families of children with CP. This study investigated the association between caregivers' psychological health and well-being and their sleep quality and the sleep of their children with CP. METHOD: Ninety-four caregivers (86% mothers; age range = 29-76 years) of children with CP aged 4 to 14 years of varying physical abilities (Gross Motor Function Classification Scale expanded and revised-level I (24), II (20), III (16), IV (10), V (24)) were recruited from a state-wide rehabilitation service. Caregivers completed the Depression, Anxiety and Stress Scale-21, Warwick-Edinburgh Mental Wellbeing Scale, Resilience Scale, Pediatric Sleep Questionnaire, Pittsburgh Sleep Quality Index, and a demographic questionnaire. RESULTS: Sleep problems were reported for 55% of children. Poor sleep quality was reported by 71% of caregivers. While 25% of caregivers reported positive well-being and 86% reported high to very high levels of resilience, 44% reported poor psychological health. Child sleep problems were related to poorer caregiver sleep quality (r = 0.47, p < 0.001). Poorer caregiver sleep quality was related to poorer caregiver psychological health (r = 0.43-0.51, all p < 0.001) and well-being (r = -0.48, p < 0.001), but not resilience (r = 0.18, p = 0.11). CONCLUSIONS: High numbers of children with CP and their caregivers experience poor sleep that extends far past infancy. Poor sleep quality is associated with poorer psychological health and well-being for caregivers. Further development of responsive support services that address caregivers' sleep is essential.

A profile of reference data for shear modulus for lower limb muscles in typically developing children.

BACKGROUND: Shear wave elastography can measure shear wave speed in muscles, which is used to estimate shear modulus. Normative values and standardized methodology are needed for children. Study aims were to: estimate shear modulus behavior of lower limb muscles of typically developing children; and establish a profile of reference data and recommendations for clinical assessment. METHODS: Forty-one typically developing children (mean 9.7 y, SD 1.9 y) completed assessment of resting shear modulus of rectus femoris, biceps femoris, gastrocnemius lateralis and tibialis anterior at short and long lengths using shear wave elastography. Effects of muscle length, age, sex and BMI were examined. Then, our data and data from a scoping review for typical individuals were collated according to Net-Longitudinal Tension Angle (net proximal and distal joint angles). FINDINGS: Shear modulus was: higher at long versus short muscle lengths for all four muscles (P < 0.001); correlated with increasing age for tibialis anterior at short (r = 0.39) and long lengths (r = 0.42) (both P = 0.01); but not related to sex or BMI. Shear modulus: tended to increase with increasing Net-Longitudinal Tension Angle for 18 lower limb muscles; and was higher for children than adults for some muscles (e.g. tibialis anterior and gastrocnemius lateralis, both P < 0.001). INTERPRETATION: In typically developing children, shear modulus of lower limb muscles increases with increasing Net-Longitudinal Tension Angle. Recommendations enable comparison of values across different test positions and populations. Some relation between shear modulus and age was identified, but more research is needed.

Participation Measures for Infants and Toddlers Aged Birth to 23 Months: A Systematic Review.

AIMS: Participation is a key health outcome; however little is known specifically about how to measure participation of infants and toddlers. The aim of this review was to identify and examine the psychometric properties of participation measures for infants and toddlers aged birth to 23 months according to family of Participation-Related Constructs (fPRC). METHODS: Four electronic databases were searched to identify (i) measures available in English, (ii) that quantify at least one participation concept of 'attendance' and/or 'involvement' according to the fPRC, (iii) with psychometric data for infants or toddlers aged from birth to 23 months published in a full text, peer reviewed journal. Psychometric quality was examined using the COSMIN checklist. RESULTS: Four measures met the inclusion criteria: Child Engagement in Daily Life (CEDL) measure, Daily Activities of Infants Scale (DAIS), Test of Playfulness (ToP), and Young Children's Participation and Environment Measure (YC-PEM). All measured 'attendance' and three also measured 'involvement'. Measures showed unknown to moderate validity and unknown to moderate reliability, with the CEDL reporting the strongest psychometric properties. CONCLUSION: There are few measures that evaluate infant and toddler participation. Further research is needed to develop psychometrically sound participation measures that evaluate 'attendance' and 'involvement' for this population.