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.

The power of Para sport: the effect of performance-focused swimming training on motor function in adolescents with cerebral palsy and high support needs (GMFCS IV) - a single-case experimental design with 30-month follow-up.

OBJECTIVE: This study aims to evaluate the effect of a performance-focused swimming programme on motor function in previously untrained adolescents with cerebral palsy and high support needs (CPHSN) and to determine whether the motor decline typical of adolescents with CPHSN occurred in these swimmers. METHODS: A Multiple-Baseline, Single-Case Experimental Design (MB-SCED) study comprising five phases and a 30-month follow-up was conducted. Participants were two males and one female, all aged 15 years, untrained and with CPHSN. The intervention was a 46-month swimming training programme, focused exclusively on improving performance. Outcomes were swim performance (velocity); training load (rating of perceived exertion min/week; swim distance/week) and Gross Motor Function Measure-66-Item Set (GMFM-66). MB-SCED data were analysed using interrupted time-series simulation analysis. Motor function over 46 months was modelled (generalised additive model) using GMFM-66 scores and compared with a model of predicted motor decline. RESULTS: Improvements in GMFM-66 scores in response to training were significant (p<0.001), and two periods of training withdrawal each resulted in significant motor decline (p≤0.001). Participant motor function remained above baseline levels for the study duration, and, importantly, participants did not experience the motor decline typical of other adolescents with CPHSN. Weekly training volumes were also commensurate with WHO recommended physical activity levels. CONCLUSIONS: Results suggest that adolescents with CPHSN who meet physical activity guidelines through participation in competitive swimming may prevent motor decline. However, this population is clinically complex, and in order to permit safe, effective participation in competitive sport, priority should be placed on the development of programmes delivered by skilled multiprofessional teams. TRIAL REGISTRATION NUMBER: ACTRN12616000326493.

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.

Reproducibility and validity of the Functional Communication Classification System for young children with cerebral palsy.

AIM: To examine interrater agreement and validity of the Functional Communication Classification System (FCCS) for young children with cerebral palsy (CP) aged 2 or 3 years. METHOD: Speech-language pathologist (SLP) and parent FCCS ratings for 31 children with CP (aged 2y, n=16; aged 3y, n=15; 18 males, 13 females) were examined for interrater agreement using a weighted Cohen's kappa statistic. Relationships between FCCS (SLP) ratings and: (1) concurrent validity with the Language Use Inventory, a standardized pragmatic assessment for children aged 18 to 47 months, (2) gross motor and fine motor function, (3) associated impairments (visual and intellectual), and (4) primary expressive communication mode were examined using Spearman's correlation coefficients. RESULTS: Almost perfect interrater agreement between SLP and parent FCCS ratings were found (kw =0.94). Correlations with FCCS (SLP) were excellent for pragmatic function (rs =-0.83, p<0.001), intellectual function (rs =0.89, p<0.001), and primary expressive communication mode (rs =0.92, p<0.001). Correlations were good for gross motor function (rs =0.72, p<0.001) and visual impairment (rs =0.70, p<0.001) and fair for fine motor function (rs =0.53, p<0.002). Analysis was unwarranted for epilepsy (n=1 out of 31) and hearing-associated impairments (n=0 out of 31). INTERPRETATION: The FCCS has excellent interrater agreement and validity for communication classification of children with CP aged 2 or 3 years and is highly suitable for surveillance and research purposes. What this paper adds The Functional Communication Classification System (FCCS) is a valid instrument for children with cerebral palsy (CP) aged 2 or 3 years. Excellent agreement exists between speech-language pathologist and parent FCCS ratings. The FCCS has excellent correlation with intelligence, pragmatic function, and primary expressive mode. Stronger correlations with the Gross Motor Function Classification System and vision exist for children aged 2 or 3 years. Weaker correlations with manual ability exist when compared to older children with CP.

Postural Control Performance on the Functional Reach Test: Validity of the Kids-Balance Evaluation Systems Test (Kids-BESTest) Criteria.

OBJECTIVE: Evaluate the validity of the Kids-Balance Evaluation Systems Test (Kids-BESTest) clinical criteria for the Functional Reach Test (FRT) forward and lateral with laboratory measures of postural control in children with cerebral palsy (CP). DESIGN: Psychometric study of face, concurrent, and content validity. SETTING: Clinical laboratory. PARTICIPANTS: Children (N=58) aged 7-18 years (ambulant CP n=17, typically developing [TD] n=41). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Stability limits in standing were assessed using the Kids-BESTest items for FRT forwards (FRTFORWARD), FRT lateral preferred (FRTLATERAL(P)), and FRT lateral nonpreferred (FRTLATERAL(NP)). Force platforms and kinematic markers were used to collect information on center of pressure (CoP) and joint movement during reach. Analyses included face validity (Kids-BESTest scores compared between CP and TD groups), concurrent validity (agreement between Kids-BESTest scores and digitally derived scores), and content validity (relations between Kids-BESTest scores with kinematic and CoP data). RESULTS: Face validity of Kids-BESTest criteria was demonstrated with lower scores for CP compared to TD groups for FRTFORWARD (P<.001) and FRTLATERAL(NP) (P=.03) and equal scores for FRTLATERAL(P) (P=.12). For concurrent validity, agreement between Kids-BESTest scores and digitally derived scores was good to excellent for FRTLATERAL(both P/NP) (88%-100%) and good for FRTFORWARD (86%-88%) for both groups. For content validity, the CP group Kids-BESTest scores were correlated with CoP-RangeFORWARD during FRTFORWARD (ρ=0.68) and CoP-RangeLATERAL during FRTLATERAL(NP) (ρ=0.57). For kinematic data, correlations were moderate-high between Kids-BESTest scores and range of hip flexion (ρ=0.51) and ankle plantar flexion (ρ=0.75) during FRTFORWARD, and trunk lateral flexion (ρ=0.66) during FRTLATERAL(NP). CONCLUSION: The FRTFORWARD demonstrated face, concurrent, and content validity. The FRTLATERAL(P/NP) demonstrated concurrent validity, but partial face and content validity. To improve validity of Kids-BESTest FRT criteria, additional descriptors have been added under the scoring criteria to enable clinicians to quantify observed reach strategies.

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.

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.

High-level motor skills assessment for ambulant children with cerebral palsy: a systematic review and decision tree.

AIM: To examine the psychometric evidence for high-level motor skills assessment tools for ambulant, school-aged children with cerebral palsy (CP). METHOD: We searched five databases for population (children with CP aged 5-18y in Gross Motor Function Classification System levels I and II), assessment focus (high-level motor skills), and psychometric evidence. We evaluated evidence strength using the number of studies, quality, and conduct according to COnsensus-based Standards for the selection of health status Measurement INstruments checklists. RESULTS: Eleven assessments (39 studies) met the criteria. Seven high-level motor skills assessment items (Muscle Power Sprint Test, 10m Shuttle Run Test, 10×5m Sprint Test, vertical jump, standing broad jump, seated throw, and Timed Up and Down Stairs) had strong validity and responsiveness evidence. Jumping items and seated throw lacked reliability data. Four high-level motor skills assessment batteries (Functional Strength Measure in CP, Gross Motor Function Measure-Challenge, Peabody Developmental Motor Scale, and Test of Gross Motor Development, Second Edition) had moderate-to-strong validity and/or reliability evidence. Responsiveness data were only available for the Gross Motor Function Measure-Challenge battery. The decision tree was developed with five levels: clinical feasibility, relevance, tool design, clinical utility, and psychometric properties. INTERPRETATION: High-level motor skills assessment tools have strong psychometric evidence for ambulant, school-aged children with CP. The decision tree can assist clinicians and researchers in identifying appropriate tools to measure high-level motor skills. WHAT THIS PAPER ADDS: An evidence-based decision tree guides the selection of appropriate high-level motor skills assessment tools. Seven high-level motor skills assessment items have strong psychometric evidence and clinical utility for ambulant children with cerebral palsy. Four high-level motor skills assessment batteries with recreation and mobility items have emerging psychometric evidence in this population.

Validity of the Ages and Stages Questionnaire to identify young children with gross motor difficulties who require physiotherapy assessment.

AIM: To determine if the Ages and Stages Questionnaire, Third Edition Gross Motor domain (ASQ-3-GM) score is predictive of motor performance on the Alberta Infant Motor Scale (AIMS) and/or Neurological, Sensory, Motor, Developmental Assessment (NSMDA). METHOD: This was a cross-sectional study involving analysis of a 1-year consecutive clinical sample of data obtained from children attending a specialist public outpatient service. Participants were 84 children aged 0 to 5 years (mean age 24.9mo, SD 18.4mo; 50 males, 34 females) referred for physiotherapy assessment of gross motor skills in a tertiary child development service. Parents completed the ASQ-3 questionnaire and children were assessed using the AIMS (if aged 0-18mo) and/or NSMDA (all children). To determine possible relationships between ASQ-3-GM scores with AIMS and NSMDA scores, we calculated Spearman's rank correlation coefficients. To determine validity of the ASQ-3-GM 'refer for further assessment' ('refer') cut-off score to identify gross motor difficulties we calculated frequency distributions and crosstab analyses. RESULTS: ASQ-3-GM scores correlated with AIMS centile rank (r=0.697, p<0.001) and NSMDA motor performance classification (r=-0.548, p<0.001). The ASQ-3-GM 'refer' cut-off had 77% sensitivity, 91% specificity, and 95% positive predictive value (PPV) to identify children that scored ≤10th centile on the AIMS and 57% sensitivity, 92% specificity, and 97% PPV to identify children with at least minimal dysfunction on the NSMDA. INTERPRETATION: The ASQ-3-GM 'refer' cut-off score is a valid predictor of gross motor difficulties in young children. WHAT THIS PAPER ADDS: The Ages and Stages Questionnaire, Third Edition Gross Motor domain (ASQ-3-GM) score is valid to identify gross motor difficulties in young children. The ASQ-3-GM 'refer' cut-off had 95% positive predictive value (PPV) for children that scored ≤10th centile on the Alberta Infant Motor Scale. The ASQ-3-GM 'refer' cut-off had 97% PPV for at least minimal dysfunction on the Neurological, Sensory, Motor, Developmental Assessment.

Validez del Cuestionario de Edades y Etapas para identificar a niños pequeños con dificultades motoras gruesas que requieren evaluación de fisioterapia OBJETIVO: Determinar si el puntaje del Cuestionario de Edades y Etapas, dominio de Motricidad Gruesa de la Tercera Edición (ASQ-3-GM) es predictivo del rendimiento motor en la Escala Motora Infantil de Alberta (AIMS) y / o Evaluación Neurológica, Sensorial, Motora y de Desarrollo (NSMDA) ) MÉTODO: Este fue un estudio transversal que incluyó el análisis de una muestra clínica consecutiva de 1 año de datos obtenidos de niños que asistían a un servicio público ambulatorio especializado. Los participantes fueron 84 niños de 0 a 5 años (edad media 25m, DE 18m; 50 varones, 34 mujeres) remitidos para evaluación de fisioterapia de habilidades motoras gruesas en un servicio de desarrollo infantil de tercer nivel. Los padres completaron el cuestionario ASQ-3 y los niños fueron evaluados utilizando el AIMS (si tenían entre 0 y 18 meses) y / o NSMDA (todos los niños). Para determinar las posibles relaciones entre las puntuaciones ASQ-3-GM con las puntuaciones AIMS y NSMDA, calculamos los coeficientes de correlación de rango de Spearman. Para determinar la validez del ASQ-3-GM "remítase a una puntuación de corte de evaluación adicional" ("refiérase") para identificar dificultades motoras graves, calculamos distribuciones de frecuencia y análisis de tabla cruzada. RESULTADOS: Las puntuaciones ASQ-3-GM se correlacionaron con el rango de percentiles AIMS (r = 0.697, p <0,001) y la clasificación de rendimiento motor NSMDA (r = -0,548, p <0,001). El límite de 'referencia' ASQ-3-GM tenía 77% de sensibilidad, 91% de especificidad y 95% de valor predictivo positivo (VPP) para identificar a los niños que obtuvieron ≤10 percentil en el AIMS y 57% de sensibilidad, 92% de especificidad, y 97% de VPP para identificar a niños con disfunción mínima en el NSMDA. INTERPRETACIÓN: La puntuación de corte ASQ-3-GM 'referido' es un predictor válido de dificultades motoras gruesas en niños pequeños.

Validade do Questionário Idades e Fases para identificar crianças pequenas com dificuldades motoras que precisam de avaliação fisioterapêutica OBJETIVO: Determinar se a pontuação no Questionário de Idades e Fases, Terceira edição domínio Motor Grosso (ASQ-3-MG) é preditiva do desempenho moor segundo a Escala Motora Infantil de Alberta (AIMS) e /ou da Avaliação do Desenvolvimento Neurológico, Sensorial e Motor (NSMDA). MÉTODO: Este foi um estudo transversal envolvendo análise por um ano consecutivo de uma amostra clínica de dados obtidos de crianças frequentando um serviço ambulatorial especializado público. Participantes foram 84 crianças com idades de 0 a 5 anos (média de idade 25m, DP 18m; 50 do sexo masculino, 34 do sexo feminino) encaminhados para avaliação de fisioterapia das habilidades motoras grossas em um serviço terciário de desenvolvimento infantil. Os pais completaram o questionário ASQ-3 e as crianças foram avaliadas com a AIMS (se idade de 0-18m) e/ou NSMDA (todas as crianças). Para determinar possíveis relações entre escores ASQ-3-MG com escores AIMS e NSMDA, calculamos coeficientes de correlação de Spearman. Para determinar a validade do escore de corte do ASQ-3-MG para 'encaminhar para melhor avaliação' ('encaminhar) em identificar dificuldades motoras grossas, calculamos distribuições de frequências e análises cruzadas. RESULTADOS: Os escores ASQ-3-MG se correlacionaram com os percentis AIMS (r=0,697, p<0,001) e a classificação do desempenho motor segundo a NSMDA (r=-0,548, p<0,001). O escore de corte do ASQ-3-MG 'encaminhar' teve 77% de sensibilidade, 91% de especificidade , e 95% de valor preditivo positivo (VPP) para identificar crianças com percentil ≤10º na AIMS e 57% de sensibilidade, 92% de especificidade, e 97% VPP para identificar crianças com disfunção pelo menos mínima no NSMDA. INTERPRETAÇÃO: O escore de corte do ASQ-3-GM 'encaminhar' é um preditor válido de dificuldades motoras em crianças pequenas.

Effect of Pilates Intervention on Physical Function of Children and Youth: A Systematic Review.

OBJECTIVE: To conduct a systematic review to evaluate the effectiveness of Pilates intervention on physical function in children and youth. DATA SOURCES: Six electronic databases were searched from inception to June 2018 using the term Pilates. STUDY SELECTION: Articles were included if they (1) reported original data for a Pilates-only intervention; (2) involved children or youth aged up to 22 years; (3) reported a musculoskeletal, pain, or function study outcome. Searches identified 2565 papers and 11 studies fulfilled the inclusion criteria. DATA EXTRACTION: The 2 authors independently screened and assessed all studies and any discrepancies were resolved by consensus. DATA SYNTHESIS: Level of evidence was classified using the Oxford Centre for Evidence Based Medicine. Study quality was assessed using the Physiotherapy Evidence Database for randomized controlled trials and Risk of Bias in N-of-1 Trials scale for single case experimental design studies. Four studies were high quality, 3 were fair quality, and 4 were of low quality. Findings showed that Pilates does appear to improve flexibility (n=6); muscle strength, power and movement speed (n=3); postural control, orientation and balance (n=3); metabolic cost (n=1); functional ability (n=1) and health related quality of life (n=1) and reduce pain (n=2) in children with musculoskeletal pathology, the majority with a large effect size. Pilates content varied from group-based mat classes to individualized programs using specialized equipment. Intervention dose and frequency varied widely. CONCLUSIONS: This is the first systematic review of the effect of Pilates intervention for children and youth. Research is in the preliminary stages; however, Pilates does appear to improve flexibility, strength and postural control, and reduce pain in children with musculoskeletal pathology. Further research is warranted to determine the potential effectiveness of Pilates for children and youth for various population groups and to develop comprehensive treatment guidelines.

The Functional Communication Classification System: extended reliability and concurrent validity for children with cerebral palsy aged 5 to 18 years.

AIM: To examine psychometric properties and clinical utility of the Functional Communication Classification System (FCCS) for classifying observable communication function in children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Eighty-two children (38 males, 44 females) with CP in six age groups (5y [n=15], 8y [n=14], 10y [n=14], 12y [n=14], 15y [n=11], and 17y [n=14]) were assessed by a speech-language pathologist (SLP) and parent for FCCS ratings. Data were compared with: (1) everyday communication function, assessed using the Clinical Evaluation of Language Fundamentals - Fourth Edition Pragmatics Profile (CELF-4 PP) for familiar and unfamiliar partners; (2) motor speech, gross and fine motor function; and (3) associated impairments, including epilepsy, intelligence, hearing, and vision. Interrater agreement was calculated for FCCS ratings using kappa (κ) statistics. Relationships between FCCS ratings and other measures were examined using Spearman's correlation coefficient. RESULTS: Almost perfect interrater agreement was demonstrated between SLP and parent FCCS ratings (κw =0.96). Correlations were excellent between FCCS ratings with CELF-4 PP ratings, motor speech, and intellect; moderate with gross and fine motor function; and fair with other associated impairments (hearing, visual, and epilepsy). There was no correlation between age and FCCS. INTERPRETATION: The FCCS is a reliable and valid communication classification system for children with CP aged 5 to 18 years, and highly suitable for surveillance, research, and clinical purposes. WHAT THIS PAPER ADDS: The Functional Communication Classification System (FCCS) is valid and reliable for communication classification in children with cerebral palsy. Excellent agreement is present between speech language pathologists and parents. The FCCS shows excellent correlation with pragmatics, motor speech, and intelligence. The FCCS is moderately correlated with gross and fine motor function. The FCCS has fair correlation with epilepsy, hearing, and vision.

Reproducibility of the Kids-BESTest and the Kids-Mini-BESTest for Children With Cerebral Palsy.

OBJECTIVE: To evaluate the reproducibility, including reliability and agreement, of the Kids Balance Evaluation Systems Test (Kids-BESTest) and the short form of Kids-BESTest (Kids-Mini-BESTest) for measuring postural control in school-aged children with cerebral palsy. DESIGN: Psychometric study of intrarater, interrater, and test-retest reliability and agreement. SETTING: Clinical laboratory and home. PARTICIPANTS: Convenience sample of children (N=18) aged 8 to 17 years with ambulant cerebral palsy (CP) (Gross Motor Function Classification System I-II) with spastic or ataxic motor type. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Postural control was assessed using the Kids-BESTest and the Kids-Mini-BESTest. An experienced physiotherapist assessed all children in real time and the testing session was videotaped. The same physiotherapist viewed and scored the video twice, at least 2 weeks apart, to assess intrarater reproducibility. Another experienced physiotherapist scored the same video to determine interrater reproducibility. Thirteen children returned for a repeat assessment with the first physiotherapist within 6 weeks and their test-retest performance was rated in real time and with video. RESULTS: Excellent reliability was observed for both the Kids-BESTest (intraclass correlation coefficient [ICC] 0.96-0.99) and Kids-Mini-BESTest (ICC 0.79-0.98). The smallest detectable change was good to excellent for all Kids-BESTest agreement analyses (5%-9%), but poor to good for Kids-Mini-BESTest analyses (9%-16%). CONCLUSION: The Kids-BESTest shows an excellent ability to discriminate postural control abilities of school-aged children with CP and it has a low smallest detectable change, suitable for use as a preintervention and postintervention outcome measure. Although the Kids-Mini-BESTest is 5 to 10 minutes shorter to administer, it has poorer reproducibility and focuses only on falls-related balance, which excludes 2 domains of postural control.

CyFiT telehealth: protocol for a randomised controlled trial of an online outpatient physiotherapy service for children with cystic fibrosis.

BACKGROUND: Telehealth and telemonitoring is an emerging area of study in people with cystic fibrosis (CF), with the potential of increasing access to care, and minimising infection control risks to patients without compromising their health outcomes. To date, limited evidence is available to support the use of telehealth in paediatric population with CF in a clinical setting. This study aims to investigate the utility of a multimodal telehealth-based outpatient physiotherapy service and assess its effect on quality of life, functional exercise capacity, hospital admission and intravenous antibiotic requirements, lung function, processes of care, participation in activities of daily living, and health economics associated with operating an innovative service. METHOD: This single centre, prospective, parallel, randomised, controlled, non-inferiority trial aims to recruit 110 children with CF between the ages 8 to 18 years of age. Participants will be randomised to the Usual Outpatient Physiotherapy Service group (Usual OPS) or the telehealth intervention group (CyFiT OPS). Quality of life, participation in activity of daily living, functional exercise capacity and patient perception of care will be examined every six months using the Cystic Fibrosis Questionnaire-Revised (CFQ-R), Children's Assessment of Participation and Enjoyment (CAPE), Preferences for Activities of Children (PAC) questionnaire, Modified Shuttle Test-25 (MST25), and Measure of Process of Care (MPOC-20) questionnaire. Physiological measurements collected during routine clinical visits such as spirometry, body weight and height, information will be retrospectively retrieved via a chart review at the end of the study. DISCUSSION: We anticipate that this multi-modal telehealth service will deliver a comparable service to traditional face-to-face models. An alternative to existing outpatient physiotherapy services may potentially increase patient options for access to care and patient-orientated outcomes such as quality of life. If deemed appropriate, the new model of care can be integrated into clinical practice immediately. TRIAL REGISTRATION: This trial is registered with the Australian and New Zealand Clinical Trial Registry ( ACTRN12617001035314 ) last updated 17th July 2018.

Muscle tone assessments for children aged 0 to 12 years: a systematic review.

AIM: The aim of this study was to identify and examine the psychometric properties of muscle tone assessments for children aged 0 to 12 years. METHOD: Four electronic databases were searched to identify studies that included assessments of resting and/or active muscle tone. Methodological quality and overall psychometric evidence of studies were rated using the COnsensus-based Standards for the selection of health Measurement INstruments checklist. RESULTS: Twenty-one assessments were identified from 97 included studies. All assessments were broad developmental assessments that included muscle tone items or subscales. Most assessments (16/21) were designed for young children (<2y). Four assessments measured resting and active tone and demonstrated at least moderate validity or reliability: the Amiel-Tison Neurological Assessment (ATNA) at term, Neonatal Intensive Care Unit Network Neurobehavioral Scale (NNNS), Premie-Neuro for newborn infants, and the Hammersmith Infant Neurological Examination (HINE) for infants aged 2 months to 2 years. For children over 2 years, the Neurological Sensory Motor Developmental Assessment (NSMDA) assesses resting and active tone but has limited validity. INTERPRETATION: The ATNA at term, NNNS, Premie-Neuro, HINE, and NSMDA can assess resting and active tone in infants and/or children. Further psychometric research is required to extend reliability, validity, and responsiveness data, particularly for older children. WHAT THIS PAPER ADDS: This is the first review of muscle tone assessments for children aged 0 to 12 years. Twenty-one assessments contain muscle tone items and 16 are for children under 2 years. Four assessments are reliable or valid to measure both resting and active tone.

SPORTS STARS study protocol: a randomised, controlled trial of the effectiveness of a physiotherapist-led modified sport intervention for ambulant school-aged children with cerebral palsy.

BACKGROUND: Modified sport interventions run by physiotherapists have shown potential as cost-effective, engaging, and effective interventions to improve gross motor skills and support transition to real-world sports participation for children with cerebral palsy. At present, this population demonstrates decreased participation in physical activities and sport compared to peers due to barriers ranging from body function to accessibility challenges. Sport provides culturally relevant opportunities for social integration, community participation and physical activity and has been shown to improve the fitness, self-esteem, confidence and quality of life of children with disabilities. The Sports Stars physiotherapy group has been designed to support the development of a range of fundamental movement and sports skills through activity skill practice and participation in modified popular Australian sports. METHODS: This randomised, waitlist controlled, assessor blinded, superiority trial with two parallel groups will aim to compare the effectiveness of Sports Stars to standard care across all ICF domains. Children in the Sports Stars group are expected to demonstrate greater improvement in their individually-selected, sports related goals measured by the Canadian Occupational Performance Measure. This study will aim to assess sixty ambulant children aged six to 12 years with a diagnosis of cerebral palsy. Children will be excluded if they have had recent Botox or neurological/orthopaedic surgery. The Sports Stars intervention includes eight, one-hour, weekly physiotherapy group sessions with four to six participants and one lead physiotherapist. Outcome measures will be collected pre, post and 12 weeks post the immediate Sports Stars group to assess change immediately after, and at follow up time points. DISCUSSION: This will be the first study of its kind to investigate a culturally relevant sports-focussed fundamental movement skills physiotherapy group for ambulant children with cerebral palsy. The findings will add to a growing pool of evidence supporting group physiotherapy for children with cerebral palsy and the Sports Stars group will provide an avenue for children to transition from individual physiotherapy to mainstream and modified recreational and competitive sports. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry: ACTRN12617000313336 Registered 28, February 2017. WHO Universal Trial Number: U1111-1189-3355 Registered 1, November 2016.

Impact of Parent Practices of Infant Positioning on Head Orientation Profile and Development of Positional Plagiocephaly in Healthy Term Infants.

AIMS: The influence of infant positioning on the development of head orientation and plagiocephaly is not clear. This study explored the relationship between infant body and head positioning, with the development of asymmetrical head orientation and/or positional plagiocephaly. Methods: Clinician measurement of head orientation profile and parent-reported infant positioning data were collected for 94 healthy term infants at 3, 6, and 9 weeks of age. Plagiocephaly was measured at 9 weeks with the modified Cranial Vault Asymmetry Index. RESULTS: More severe plagiocephaly was associated with longer supine-sleep-maximum (p = 0.001) and longer supine-lying-total (p = 0.014) at 6 weeks. Prone positioning was not associated with plagiocephaly. Parent-reported head asymmetry during awake and sleep time at 3 weeks identified infants with clinician-measured head asymmetry at 9 weeks. Better symmetry in head turning was associated with more side-lying-total time by 9 weeks (p = 0.013). CONCLUSIONS: Our results showed that infant positioning is associated with early head orientation and plagiocephaly development. Early parent-reported asymmetry during awake and sleep time is an important indicator for the need for professional assessment and advice. A Plagiocephaly Prevention Strategy and Plagiocephaly Screening Pathway are provided for clinicians and parents.

A systematic review of scales to measure dystonia and choreoathetosis in children with dyskinetic cerebral palsy.

AIM: To identify and systematically review the psychometric properties and clinical utility of dystonia and choreoathetosis scales reported for children with cerebral palsy (CP). METHOD: Six electronic databases were searched for dystonia and choreoathetosis scales with original psychometric data for children with CP aged 0 to 18 years. RESULTS: Thirty-four papers met the inclusion criteria, which contained six scales purported to measure dystonia and/or choreoathetosis in children with CP: the Burke-Fahn-Marsden Dystonia Rating Scale; Barry-Albright Dystonia Scale; Unified Dystonia Rating Scale; Movement Disorder-Childhood Rating Scale; Movement Disorder-Childhood Rating Scale 0-3 Years; and the Dyskinesia Impairment Scale. INTERPRETATION: Each scale provides useful information about dyskinesia, with most focusing on dystonia. The Barry-Albright Dystonia Scale, which was designed for CP, is the most commonly reported scale and least complex to use clinically. The Dyskinesia Impairment Scale is the only tool to consider both dystonia and choreoathetosis in CP. All tools are designed to classify movement disorders at the level of body functions and structures, rather than activity limitations or participation restrictions, although many provide some insight into the impact of dystonia on activities. Further studies are required to fully examine the validity, reliability, responsiveness, and clinical utility of each scale specifically for children with CP.

myTREEHOUSE Self-Concept Assessment: preliminary psychometric analysis of a new self-concept assessment for children with cerebral palsy.

AIM: To evaluate the preliminary validity and reliability of the myTREEHOUSE Self-Concept Assessment for children with cerebral palsy (CP) aged 8 to 12 years. METHOD: The myTREEHOUSE Self-Concept Assessment includes 26 items divided into eight domains, assessed across three Performance Perspectives (Personal, Social, and Perceived) and an additional Importance Rating. Face and content validity was assessed by semi-structured interviews with seven expert professionals regarding the assessment construct, content, and clinical utility. Reliability was assessed with 50 children aged 8 to 12 years with CP (29 males, 21 females; mean age 10y 2mo; Gross Motor Function Classification System [GMFCS] level I=35, II=8, III=5, IV=1; mean Wechsler Intelligence Scale for Children - Fourth Edition [WISC-IV]=104), whose data was used to calculate internal consistency of the scale, and a subset of 35 children (20 males, 15 females; mean age 10y 5mo; GMFCS level I=26, II=4, III=4, IV=1; mean WISC-IV=103) who participated in test-retest reliability within 14 to 28 days. RESULTS: Face and content validity was supported by positive expert feedback, with only minor adjustments suggested to clarify the wording of some items. After these amendments, strong internal consistency (Cronbach's α 0.84-0.91) and moderate to good test-retest reliability (intraclass correlation coefficient 0.64-0.75) was found for each component. INTERPRETATION: The myTREEHOUSE Self-Concept Assessment is a valid and reliable assessment of self-concept for children with CP aged 8 to 12 years.

Perspectives on Postural Control Dysfunction to Inform Future Research: A Delphi Study for Children With Cerebral Palsy.

OBJECTIVE: To identify whether consensus can be achieved in how clinicians and researchers define, describe, assess, and treat postural control dysfunction in children with cerebral palsy (CP). DESIGN: Delphi study with 3 iterative rounds. SETTING: Electronic survey. PARTICIPANTS: Researchers and/or clinicians (N=43) from 7 countries with a mean ± SD of 20±11 years of experience working with children with CP participated. Participants included authors of published works on postural control in CP (identified from a recent systematic review), members of the Australasian Academy of CP and Developmental Medicine, and 2 major Australian rehabilitation providers. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Delphi study consisted of 3 iterative rounds of surveys. In Round 1, respondents answered open-ended questions regarding their views on (1) definition items for postural control, (2) theoretical frameworks, (3) methods for assessment, and (4) interventions for postural control dysfunction in children with CP. Rounds 2 and 3 were made up of items generated by participants in Round 1 and combined with items identified from the literature. Participants indicated their level of agreement for each item on a 7-point Likert scale. Threshold for consensus was ≥85% agreement. RESULTS: Of 306 items generated, 174 reached consensus by Round 3. Most postural control definition items (90%) achieved consensus. Two theoretical frameworks (14%) reached consensus. Less than half (42%) of assessment items reached consensus. More individual assessment items (89%) reached consensus than multi-item tools (4%). Just over half (61%) of the items generated for interventions reached consensus. CONCLUSION: Consensus was achieved for a postural control definition. However, substantial research is needed to establish a comprehensive, postural control-specific framework and suite of assessments. These would provide a foundation to improve intervention selection and dosage.

Positional plagiocephaly is associated with sternocleidomastoid muscle activation in healthy term infants.

PURPOSE: To explore the relationship between sternocleidomastoid activation and positional plagiocephaly in healthy full term infants. METHODS: Participants were 82 infants from a regionally based-longitudinal study of infant development. Sternocleidomastoid (SCM) activation was assessed using active head-righting responses of body-on-head with and against gravity and head-on-body against gravity at 3, 6 and 9 weeks. Plagiocephaly was assessed using the Modified Cranial Vault Asymmetry Index (mCVAI) at 9 weeks. RESULTS: More severe plagiocephaly was associated with more severe asymmetry in active head-righting responses at all ages (p < 0.001). Greater right-sided occipital flatness was related to stronger contralateral/left SCM activation at 3 and at 9 weeks (p = 0.008). Greater left-sided occipital flatness was related to stronger contralateral/right SCM activation at 3 weeks (p = 0.004). In infants with any right-sided occipital flatness, the mCVAI was greater in infants with asymmetrical gravity assisted body-on-head responses at 3 weeks (mCVAI = 4.31 (2.01)%, 95% CI 2.87-5.75) compared to those with symmetrical responses (mCVAI = 2.64 (1.66)%, 95% CI 2.06-3.22) (p = 0.011). CONCLUSIONS: Sternocleidomastoid activation asymmetry is a significant contributor to plagiocephaly development by 9 weeks of age due to stronger contralateral SCM activation. Active head-righting responses are appropriate to assess sternocleidomastoid activation in infants under 2 months of age.