International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders: A Consensus Statement.

Importance: The use of evidence-based standardized outcome measures is increasingly recognized as key to guiding clinical decision-making in mental health. Implementation of these measures into clinical practice has been hampered by lack of clarity on what to measure and how to do this in a reliable and standardized way. Objective: To develop a core set of outcome measures for specific neurodevelopmental disorders (NDDs), such as attention-deficit/hyperactivity disorder (ADHD), communication disorders, specific learning disorders, and motor disorders, that may be used across a range of geographic and cultural settings. Evidence Review: An international working group composed of clinical and research experts and service users (n = 27) was convened to develop a standard core set of accessible, valid, and reliable outcome measures for children and adolescents with NDDs. The working group participated in 9 video conference calls and 8 surveys between March 1, 2021, and June 30, 2022. A modified Delphi approach defined the scope, outcomes, included measures, case-mix variables, and measurement time points. After development, the NDD set was distributed to professionals and service users for open review, feedback, and external validation. Findings: The final set recommends measuring 12 outcomes across 3 key domains: (1) core symptoms related to the diagnosis; (2) impact, functioning, and quality of life; and (3) common coexisting problems. The following 14 measures should be administered at least every 6 months to monitor these outcomes: ADHD Rating Scale 5, Vanderbilt ADHD Diagnostic Rating Scale, or Swanson, Nolan, and Pelham Rating Scale IV; Affective Reactivity Index; Children's Communication Checklist 2; Colorado Learning Disabilities Questionnaire; Children's Sleep Habits Questionnaire; Developmental-Disability Children's Global Assessment Scale; Developmental Coordination Disorder Questionnaire; Family Strain Index; Intelligibility in Context Scale; Vineland Adaptive Behavior Scale or Repetitive Behavior Scale-Revised and Social Responsiveness Scale; Revised Child Anxiety and Depression Scales; and Yale Global Tic Severity Scale. The external review survey was completed by 32 professionals and 40 service users. The NDD set items were endorsed by more than 70% of professionals and service users in the open review survey. Conclusions and Relevance: The NDD set covers outcomes of most concern to patients and caregivers. Use of the NDD set has the potential to improve clinical practice and research.

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.

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.

Dietary Patterns of Competitive Swimmers with Moderate-to-Severe Cerebral Palsy: A 3-Year Longitudinal Evaluation.

AIM: To evaluate the longitudinal dietary patterns of three adolescents with moderate-to-severe cerebral palsy (CP) participating in a performance-focused swimming training intervention. METHOD: Participants were three previously inactive adolescents with CP (15-16 years, GMFCS IV) who had recently (<6 months) enrolled in a swimming training program. Diet quality from diet histories was calculated at 10-time points over 3.25 years using the Dietary Guidelines Index for Children and Adolescents (DGI-CA) and the Healthy Eating Index for Australian Adults (HEIFA-2013). A food group analysis was compared to the Australian Guide to Healthy Eating recommendations. Trends were considered in the context of dietary advice given and the training load. RESULTS: Longitudinal diet quality scores were consistent and ranged from 40 to 76 (DGI-CA) and 33 to 79 (HEIFA-2013). Food group intake remained stable; participants rarely met the recommendations for fruit, vegetables, dairy, grain, and meat but frequently achieved discretionary serves. CONCLUSIONS: Participants with moderate-to-severe CP who were enrolled in a performance-focused swimming training intervention and were monitored frequently maintained diet quality throughout a period where it conventionally declined. Scores were higher than the general population and were maintained irrespective of the training load. Participants frequently met food group recommendations for discretionary foods and were comparable to the general population for other food groups.

Community-based physical activity interventions for adolescents and adults with complex cerebral palsy: A scoping review.

AIM: To identify implementation strategies and safety outcomes (adverse events) of community-based physical activity interventions for adolescents and adults with complex cerebral palsy (CP). METHOD: Five electronic databases were systematically searched to April 2022. Data were extracted on the implementation and safety of physical activity interventions for adolescents and adults with CP, classified in Gross Motor Function Classification System (GMFCS) levels IV and V, delivered in a community setting. RESULTS: Seventeen studies with 262 participants (160 participants classified in GMFCS levels IV or V) were included. Community settings included schools (n = 4), participants' homes (n = 3), gymnasia (n = 2), swimming pools (n = 2), and other settings (n = 4). Most studies specified medical or safety exclusion criteria. Implementation strategies included pre-exercise screening, use of adapted equipment, familiarization sessions, supervision, physical assistance, and physiological monitoring. Attendance was high and attrition low. Nine studies reported non-serious, expected, and related events. Four studies reported minor soreness and four studies reported minor fatigue post-exercise. Serious adverse events related to exercise were infrequent (reported for 4 of 160 participants [<2%]: three participants withdrew from an exercise programme and one participant ceased exercise for a short period). Most frequently reported was pain, requiring temporary exercise cessation or programme change, or study withdrawal (three participants). INTERPRETATION: For most adolescents and adults with CP classified in GMFCS levels IV and V, physical activity interventions can be safely performed in a community setting, without post-exercise pain or fatigue, or serious adverse events. WHAT THIS PAPER ADDS: Supervised community-based physical activity interventions can be safely performed by people with complex cerebral palsy. Post-exercise pain or fatigue was not common among those classified in Gross Motor Function Classification System levels IV or V. Serious adverse events are infrequent when exercising in community settings, with safety strategies.

Time cost associated with sports participation for athletes with high support needs: a time-motion analysis of tasks required for para swimming.

Objectives: People with cerebral palsy and high support needs (CP&HSN) are profoundly inactive but also under-represented in studies evaluating physical activity interventions. Reasons for their exclusion have not been evaluated. We hypothesised that CP&HSN would be associated with high time costs of preparatory activities (eg, getting dressed/undressed), possibly contributing to low participation and under-representation. Accordingly, this pilot study aimed to: (1) evaluate whether the time required for preparatory activities was extremely different (≥3 SD) between swimmers with and without CP&HSN; and (2) provide a qualitative indication of the preparatory tasks undertaken by swimmers with CP&HSN. Methods: Each of three experienced (5 years) para swimmers with CP&HSN and 20 non-disabled swimmers were timed entering and then exiting the pool on three occasions. Mean entry and exit time for each para swimmer was compared with the group mean for non-disabled swimmers, and differences of greater than 3.0 SD were considered extreme. A qualitative description of the tasks completed by the para swimmers was recorded. Results: The differences in time costs between para and non-disabled swimmers met the criterion of extreme. Pool entry times for para swimmers were 8-13 times greater (Effect size = 4.1-8.7). Pool exit times were 6-10 times greater (ES=7.0-9.5). 90% of tasks completed by para swimmers required personal assistance or wheeled mobility. Conclusions: This pilot study suggests that, compared with non-disabled swimmers, time costs for preparation to commence or depart training are extremely high for swimmers with CP&HSN. Further research is required to evaluate the veracity of these findings.

Study protocol for Running for health (Run4Health CP): a multicentre, assessor-blinded randomised controlled trial of 12 weeks of two times weekly Frame Running training versus usual care to improve cardiovascular health risk factors in children and youth with cerebral palsy.

INTRODUCTION: Children and youth with moderate-severe (Gross Motor Function Classification System (GMFCS) levels II-V) cerebral palsy (CP) participate less frequently in physical activities compared with peers without CP and have elevated risk of cardiorespiratory morbidity and mortality in adulthood. Frame Running (RaceRunning) is a new athletics discipline that is an accessible option for physical activity participation for people with moderate-severe CP. There is no high-quality evidence for the effect of Frame Running on cardiovascular disease in children and young people with CP. The primary aim of this study is to conduct a randomised controlled trial of the effect of 12 weeks of Frame Running training on risk factors for cardiovascular disease. METHODS AND NALYSIS: Sixty-two children and youth with CP (age 8-20 years) in GMFCS levels II-V will be recruited across four sites and randomised to receive either 12 weeks of Frame Running training two times weekly for 60 min, or usual care. Outcomes will be measured at baseline, immediately postintervention (primary endpoint) and 12 weeks later for retention of training effects. The primary outcome is cardiorespiratory fitness as measured by distance covered on Six Minute RaceRunner Test with 1 min heart rate recovery. Other outcomes include blood pressure, objectively measured physical activity, body mass index, waist circumference, percentage body fat, gross motor function capacity, community participation, feasibility, tolerability and safety. Adverse events will be monitored, and participants and their caregivers will be interviewed to discern their experiences of participation in Frame Running. ETHICS AND DISSEMINATION: The Children's Health Queensland Hospital and Health Service and the University of Queensland Human Research Ethics Committees have approved this study. Results will be disseminated in peer-reviewed journals and scientific conferences; through professional and athletic organisations; and to people with CP and their families. TRIAL REGISTRATION NUMBER: ACTRN12621000317897; Australian New Zealand Clinical Trials Registry number.

Does sports-specific training improve measures of impairment developed for para sport classification? A multiple-baseline, single-case experiment.

Conceptually, sports-specific training should not influence measures of impairment used to classify Para athletes. This study evaluated the extent to which measures of strength, range of movement and coordination developed for Para swimming classification changed in response to a performance-focused swimming programme. A five-phase multiple-baseline, single-case experimental research design was utilized. Three participants with cerebral palsy and high support needs completed the 64-week study, which included two 16-week performance-focused swimming training blocks. Swimming speed, isometric shoulder extension strength, shoulder flexion range of movement and upper limb coordination were monitored throughout.Interrupted Time-Series Simulation Method analysis demonstrated large, significant changes in swimming speed (m/s) during the first (d = 2.17; 95% CI 0.45-3.88; p = 0.01) and second (d = 2.59; 95% CI 1.66-3.52; p = 0.00) training blocks. In contrast, changes in strength, range of movement and coordination were predominantly trivial and non-significant. This was the first study to investigate training responsiveness of measures developed for Para sport classification. Results indicate that despite significantly improved swimming performance, impairment measures remained relatively stable, and therefore these measures of impairment may be valid for the purposes of Para swimming classification. Further research is required in elite athletes, different sports and different impairment types.