Antibiotics for the treatment of lower respiratory tract infections in children with neurodisability: Systematic review.

AIM: Determine the optimal antibiotic choice for lower respiratory tract infection (LRTI) in children with neurodisability. METHODS: Embase, Ovid Emcare and MEDLINE were searched for studies from inception to January 2023. All studies, except case reports, focusing on the antibiotic treatment of LRTI in children, with neurodisabilities were included. Outcomes included length of stay, intensive care admission and mortality. RESULTS: Nine studies met the inclusion criteria (5115 patients). All the studies were of low quality. The shortest length of stay was with anaerobic and gram-positive cover. Five studies used anaerobic, gram-positive and gram-negative cover (e.g., amoxicillin-clavulanic acid), which was frequently adequate. In one large study, it was better than gram-positive and gram-negative cover alone (e.g. ceftriaxone). Those unresponsive or more unwell at presentation improved faster on Pseudomonas aeruginosa cover (e.g., piperacillin-tazobactam). CONCLUSION: In this context, anaerobic, gram-positive and gram-negative cover is just as effective as P. aeruginosa cover, supporting empiric treatment with amoxicillin-clavulanic acid. If there is a failure to improve, broadening to include P. aeruginosa could be considered. This is consistent with a consensus statement on the treatment of LRTI in children with neurodisability. An accepted definition for what constitutes LRTI in this cohort is required before designing prospective randomised trials.

Hip displacement in children with post-neonatal cerebral palsy and acquired brain injury: a systematic review.

AIM: To systematically review the prevalence, risk factors and timing of onset of hip displacement in children with a post-neonatal (PNN) brain injury with regards to hip surveillance recommendations. METHOD: A search of PubMed, MEDLINE, Embase, CINAHL and Web of Science was conducted on 22nd February 2022. Studies were included if they reported presence of, and risk factors for, hip displacement in children with PNN brain injury. Data was extracted on patient characteristics, and analyzed in terms of risk factors of interest and timing of development of hip displacement. RESULTS: Six studies met the inclusion criteria (n = 408 participants). All were cohort studies: five retrospective and one prospective. Rates of hip displacement ranged from 1% to 100%, and were higher in children with diffuse brain injury at an early age, who were non-ambulant and had spastic quadriplegia. Hip displacement and hip dislocation were first identified at one and three months respectively following PNN brain injury. INTERPRETATION: Evidence on hip displacement in children with PNN brain injury is sparse and low quality. Children who remain non-ambulant after diffuse PNN brain injury before five years of age appear most at risk of developing progressive hip displacement and earlier hip surveillance is recommended.

As for children with cerebral palsy (CP), children with a post-neonatal (PNN) brain injury who are non-ambulant are most at risk of progressive hip displacement.Children with a diffuse brain injury before five years of age appear to be at greater risk.Hip displacement can occur very early and progress rapidly following PNN brain injury.

Clinical functional outcome measures for children with cerebral palsy after gait corrective orthopaedic surgery: A scoping review.

AIM: To identify the most frequently reported non-instrumented measures of gait, activity, and participation in children with cerebral palsy (CP) after undergoing gait corrective orthopaedic surgery. METHOD: Four databases were searched from database inception to the 9th December 2021 for studies that evaluated functional outcomes for children with CP under 18 years undergoing gait corrective orthopaedic surgery. RESULTS: Of 547 citations, 44 publications (n = 3535 participants, n = 1789 males, mean age 10 years 5 months [SD = 3 years 3 months], Gross Motor Function Classification System levels I-III at the time of surgery) were eligible for inclusion. Fourteen different outcome measures were used: one measure of gait, 10 measures of activity, and three measures of participation. Gait was measured with the Edinburgh Visual Gait Scale (EVGS; 4 out of 44). The most common activity and participation measures were the Functional Mobility Scale (FMS; 15 out of 44) and Pediatric Outcomes Data Collection Instrument (11 out of 44) respectively. No studies reported a combination of gait, activity, and participation measures. INTERPRETATION: The EVGS and FMS should be considered as core outcome measures in gait corrective orthopaedic surgery, while a measure of participation is unclear. Additional considerations for developing a comprehensive suite of outcomes include identifying a combination of clinical measures and performance-reflective questionnaires that are standardized for children with CP undergoing surgery and meaningful to clinicians and families.

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

A Mixed-Methods Feasibility Study of a Gamified Therapy Prescription App for Children with Neurodisability.

AIM: Determine the feasibility of a gamified therapy (occupational therapy, physiotherapy, speech pathology) prescription app developed for children with neurodisability for delivering school and home therapy programs (the Zingo app). METHOD: A mixed-methods feasibility study was conducted with children (and their parents, therapists, and teachers) with neurodisability (n = 8, female= 5) who were prescribed a 4-week individualized therapy program by their usual treating therapist using Zingo. Primary outcome measures were program adherence, engagement, app quality, and user experience, collected with quantitative and qualitative methods. RESULTS: Mean adherence to the program was 58.0% (SD 27.2). Our combined Engagement Index (EI) score was 74.4% (SD 11.7). App quality measured using Mobile Application Rating Scale- User version was 4.6/5 (SD 0.7, n = 6) for parents, 4.6/5 (SD 0.5, n = 5) for teachers, and 4.4/5 (SD 0.6, n = 6) for therapists. Thematic analysis of semi-structured interviews yielded a primary theme of "app as motivator" for therapy. CONCLUSIONS: Adherence findings were affected by COVID-19 outbreak however remain comparable with other studies in this cohort. EI findings compared favorably with other studies. The findings are supportive of the feasibility of Zingo for delivering home and school therapy programs for children with neurodisability and was found to motivate therapy program completion.

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement.

Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist. We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method. These recommendations are intended for use by the wide range of practitioners who care for individuals living with CP. They provide a framework for recognizing multifactorial primary and secondary potentially modifiable risk factors and for providing coordinated multidisciplinary care. We describe the methods used to generate the consensus recommendations, and the overall perspective on assessment, prevention, and treatment of respiratory illness in children with CP. WHAT THIS PAPER ADDS: The first consensus statement for preventing and managing respiratory disease in cerebral palsy (CP). Risk factors for respiratory disease in CP should be identified early. Individuals with CP at risk of respiratory disease require regular assessment of risk factors. Effective partnerships between multidisciplinary teams, individuals with CP, and families are essential. Treatment of respiratory disease in individuals with CP must be proactive.

La enfermedad respiratoria es la principal causa de mortalidad en niños con parálisis cerebral (PC). Aunque se han identificado los factores de riesgo para desarrollar enfermedades respiratorias crónicas, actualmente no existen recomendaciones completas de atención clínica para la prevención y el tratamiento de las enfermedades respiratorias. Invitamos a más de 200 médicos e investigadores de múltiples disciplinas con experiencia en el manejo de enfermedades respiratorias en niños con PC para desarrollar recomendaciones de atención utilizando un método Delphi modificado sobre la base del Método de adecuación RAND Corporation - Universidad de California en Los Ángeles. Estas recomendaciones están destinadas a ser utilizadas por la amplia gama de profesionales que atienden a personas que viven con PC. Proporcionan un marco para reconocer factores de riesgo multifactoriales primarios y secundarios potencialmente modificables y para proporcionar atención coordinada multidisciplinaria. Describimos los métodos utilizados para generar las recomendaciones de consenso, y la perspectiva general sobre la evaluación, prevención y tratamiento de enfermedades respiratorias de niños con PC.

Doença respiratória é a principal causa de mortalidade em crianças com paralisia cerebral (PC). Embora fatores de risco para desenvolver doença respiratória crônica tenham sido identificados, recomendações abrangentes de cuidado clínico e gerenciamento de doença respiratória não existem atualmente. Convidamos cerca de 200 clínicos e pesquisadores de múltiplas disciplinas com experiência no manejo de doença respiratória em crianças com PC para desenvolver recomendações de cuidado usando um método Delphi com base no método de Apropriação da Corporação RAND - Universidade da Califórnia. Estas recomendações são para uso de profissionais que atendem indivíduos com PC. Elas oferecem uma estrutura para reconhecer fatores de risco multifatoriais potencialmente modificáveis e prover cuidado multidisciplinar. Descrevemos métodos usados para gerar as recomendações do consenso, e a perspectiva geral de avaliação, prevenção e tratamento de doença respiratória em crianças com PC.

Aquatic high intensity interval training to improve aerobic capacity is feasible in adolescents with cerebral palsy: pilot randomised controlled trial.

OBJECTIVE: To investigate feasibility of aquatic high intensity interval training for adolescents with cerebral palsy, who can ambulate independently but may choose a mobility aid in some circumstances. DESIGN: Pilot randomised controlled trial. METHOD: Following baseline assessments, participants were randomised to usual care or ten weeks of twice weekly aquatic high intensity interval training. Each class comprised 10 one-minute exercise intervals separated by one-minute rest. High intensity exercise was defined as the attainment of ⩾80% of peak heart rate measured by telemetry. SETTING: Tertiary paediatric hospital. MAIN MEASURES: Primary outcomes related to the feasibility of the protocol to progress to a definitive trial. Consumer feedback was obtained. RESULTS: Of 119 potential participants, 46 appeared eligible and 17 consented, resulting in a recruitment fraction of 37% (95% CI 23-52). Twelve completed baseline assessments and were randomised (5 males; 14 years 7 months SD 2 years 0 months). In the intervention group, of the 1190 exercise stations (across all participants and sessions), heart rate data were available for 1180 stations and high intensity exercise was achieved during 1111 stations (93%, 95% CI 92-95). All randomised participants completed the study and reported that the intervention was fun and provided friendship opportunities. There were no major adverse events or exacerbation of pain. CONCLUSIONS: Aquatic high intensity interval training in ambulant adolescents with cerebral palsy is feasible, while maintaining adherence and fidelity. Uncertainty remains on the efficacy of the intervention, highlighting the need for a large definitive trial.

Exercise handout and one-on-one hand therapy for management of stiffness after plaster cast immobilization of simple phalangeal and metacarpal fractures in children: A randomized, noninferiority trial.

STUDY DESIGN: This is a noninferior, single-blind, randomized controlled trial. INTRODUCTION: Joint stiffness is common after plaster cast immobilization for simple phalanx and metacarpal fractures in children. The limited literature suggests this joint stiffness in children resolves without one-on-one therapy; however, without robust studies confirming that there is no detrimental effect from withdrawing treatment, many children are still referred. PURPOSE OF THE STUDY: The purpose of this study was to determine if an educational handout for self-management of stiffness is noninferior to one-on-one hand therapy for achieving full range of motion (ROM). METHODS: Participants were randomly assigned to group one who received the handout or group two who received hand therapy in addition to the handout. The ROM was measured by composite flexion and total active motion (TAM). The noninferiority margin was 10% difference between the two groups in the proportion of participants who achieved full ROM at two weeks after cast removal. RESULTS: Sixty participants in each group completed the study. Group difference for composite flexion was 1.7% (95% CI: -3.9% to 7.2%), demonstrating noninferiority. Group difference for TAM was inconclusive at 8.3% (95% CI: -2.1% to 18.7%). Sensitivity analysis adjusting for participants with full composite flexion at the baseline resulted in the group difference for composite flexion of 3.1% (95% CI: -3.6% to 9.8%), maintaining noninferiority, but group difference for TAM at 10.4% (95% CI: 0.0% to 20.9%), was inconclusive with the handout group significantly worse. CONCLUSION: An educational handout is noninferior to hand therapy for achieving full ROM in composite flexion but not TAM. This needs to be taken into consideration for changing clinical practise.

The effect of aquatic high-intensity interval training on aerobic performance, strength and body composition in a non-athletic population: systematic review and meta-analysis.

OBJECTIVE:: In a non-athletic population, to (1) investigate the effectiveness of high-intensity interval training in an aquatic environment (A-HIIT) on aerobic performance, strength, and body composition and (2) report on safety of this approach. METHOD:: A systematic search was undertaken of six databases until May 2018. Trials were eligible for inclusion if they compared the effect of A-HIIT in a non-athletic population with a control group that received no exercise training. Data were extracted independently by two reviewers and meta-analyses were undertaken using a random effects model to produce standardized mean difference (SMD) and 95% confidence intervals (CIs). Risk of bias was assessed using Cochrane's risk of bias tool. All studies were graded using Physiotherapy Evidence Database (PEDro) and Consensus for Exercise Reporting Template (CERT) scales to determine quality of reporting. RESULTS:: Eight studies reported over 13 papers met study criteria ( n = 377). Compared with a control group, those who completed a program of A-HIIT demonstrated greater aerobic performance (SMD 0.69 (95% CI 0.39-0.98); I2 = 0%; n = 191) and lower limb muscle strength (SMD 0.30 (95% CI 0.04-0.56); I2 = 0%; n = 237). No differences were seen in measures of body composition or the number of adverse events. All studies were at risk of performance bias. The (mean ± SD) PEDro and CERT scores were 4.9 ± 1.5 and 15.1 ± 2.1, respectively. CONCLUSION:: In a non-athletic population, A-HIIT was safe and may have improved aerobic performance and lower limb strength. The exercise interventions were well described and monitoring and reporting of exercise intensity in water was feasible.

Interventions for management of respiratory disease in young people with cerebral palsy: A systematic review.

BACKGROUND: Respiratory disease is a leading cause of hospitalizations and deaths in young people with cerebral palsy (CP). It is insidious and multifactorial. Clinical management can be complex. This systematic review describes effects of interventions for the prevention and management of respiratory disease in young people with CP. METHODS: Nine databases (Cochrane, CINAHL, Embase, EMCare, MEDLINE, PEDro, OpenGrey, ScienceDirect, and SpeechBITE) were searched. Eligibility criteria were as follows: the population included at least 50% individuals with CP aged under 26 years, the intervention was for chronic respiratory illness, the outcomes were any measurable indicators of respiratory health or morbidity; the study design could be any original study reporting effects of an intervention on measurable outcomes, and the study was published January 1998 or later. The American Academy for Cerebral Palsy and Developmental Medicine methodology guided study appraisal and synthesis. The review was registered with PROSPERO (reference number CRD42018086314). RESULTS: The search yielded 3,347 papers; 37 papers (reporting 34 studies) of these met the eligibility criteria. They included 582 participants with CP (ranging from 1 to 77 across studies) with ages from 5 months to 25 years. Interventions were diverse and included: airway clearance techniques, exercise, positioning, mealtime management, salivary management, upper airway interventions, antibiotics, gastro-intestinal interventions, and spinal surgery. There were no interventions aimed at prevention of respiratory disease in this population. Research designs were classified as Levels 2 (n = 3), 3 (n = 2), 4 (n = 25), and 5 (n = 4). CONCLUSIONS: Evidence for most respiratory interventions for young people with CP is absent or weak. No controlled trials demonstrated significant effects on respiratory morbidity, owing to their scarcity, weak designs, and inadequate power. There is an urgent need for well-designed prospective controlled studies investigating prevention and management of respiratory disease in young people with CP.

Effects of Adaptive Bungee Trampolining for Children With Cerebral Palsy: A Single-Subject Study.

PURPOSE: To assess effects of adaptive bungee trampoline training for children with cerebral palsy. METHODS: This was a single-subject intervention study, A-B-A, with 4 children aged 6 to 11 years. Measurements included muscle strength, balance, functional muscle strength, functional mobility, selected Gross Motor Function Measure items, heart rate, enjoyment, and for adverse effects-range of motion and spasticity. Goals were measured using the Canadian Occupational Performance Measure. RESULTS: Lower limb muscle strength improved in 3 children, and balance and functional strength in 2 children. The child who was not walking increased sitting and supported standing times. All participants had clinically significant increases on the Canadian Occupational Performance Measure. Adherence and enjoyment were high, with no adverse effects. CONCLUSION: Adaptive bungee trampoline training can improve strength, balance, and functional mobility in children with cerebral palsy.

Factors Associated with Respiratory Illness in Children and Young Adults with Cerebral Palsy.

OBJECTIVE: To describe associations between respiratory illness and its potential predictors in children and young adults with cerebral palsy (CP). STUDY DESIGN: Cross-sectional survey of self- and caregiver-reported respiratory symptoms for individuals aged up to 26 years with CP. Respiratory illness was indicated by 2 outcomes: (1) ≥1 respiratory hospitalizations in the past year; and (2) ≥2 courses of antibiotics for respiratory symptoms in the past year. ORs were calculated using univariate and multivariate logistic regression. RESULTS: There were 551 participants, aged 1-26 years, distributed across all gross motor function classification scale (GMFCS) levels. In univariate analyses, factors significantly associated with respiratory hospitalizations were weekly respiratory symptoms (OR 2.31, 95% CI 1.78-3.00), respiratory symptoms during meals (OR 3.23, 95% CI 1.50-5.80), gastroesophageal reflux (OR 3.01, 95% CI 1.71-5.31), coughing or choking on saliva (OR 4.36, 95% CI 2.38-8.01), current asthma (OR 3.56, 95% CI 1.97-6.42), age (0-3 years) (OR 3.24, 95% CI 1.19-8.80, compared with 13-17 years), seizures (OR 3.45, 95% CI 1.96-6.08), and scoliosis (OR 2.14, 95% CI 1.16-3.97). Nonambulatory individuals (GMFCS IV-V) were at significantly increased risk of hospitalizations only if they had food modifications and/or nasogastric or gastrostomy tube feeds (OR 5.36, 95% CI 2.89-9.96, compared with GMFCS I-III with no food modifications and no tube). All factors, except seizures and scoliosis, were significantly associated with multiple courses of antibiotics in univariate analyses. CONCLUSIONS: Oromotor dysfunction is strongly associated with respiratory illness in patients with CP.

Interobserver reliability of the Australian Spasticity Assessment Scale (ASAS).

AIM: The aim of this paper is to present the Australian Spasticity Assessment Scale (ASAS) and to report studies of its interrater reliability. The ASAS identifies the presence of spasticity by confirming a velocity-dependent increased response to rapid passive movement and quantifies it using an ordinal scale. METHOD: The rationale and procedure for the ASAS is described. Twenty-two participants with spastic CP (16 males; age range 1y 11mo-15y 3mo) who had not had botulinum neurotoxin-A within 4 months, or bony or soft tissue surgery within 12 months, were recruited from the spasticity management clinic of a tertiary paediatric teaching hospital. Fourteen muscles in each child were assessed by each of three experienced independent raters. ASAS was recorded for all muscles. Interrater reliability was calculated using the weighted kappa statistic (quadratic weighting; κqw) for individual muscles, for upper limbs, for lower limbs, and between raters. RESULTS: The weighted kappa ranged between 0.75 and 0.92 for individual muscle groups and was 0.87 between raters. INTERPRETATION: The ASAS complies with the definition of spasticity and is clinically feasible in paediatric settings. Our estimates of interrater reliability for the ASAS exceed that of the most commonly used spasticity scoring systems.

Australian hip surveillance guidelines for children with cerebral palsy: 5-year review.

AIM: To ensure hip surveillance guidelines reflect current evidence of factors influencing hip displacement in children with cerebral palsy (CP). METHOD: A three-step review process was undertaken: (1) systematic literature review, (2) analysis of hip surveillance databases, and (3) national survey of orthopaedic surgeons managing hip displacement in children with CP. RESULTS: Fifteen articles were included in the systematic review. Quantitative analysis was not possible. Qualitative review indicated hip surveillance programmes have decreased the incidence of hip dislocation in populations with CP. The Gross Motor Function Classification System was confirmed as the best indicator of risk for displacement, and evidence was found of hip displacement occurring at younger ages and in young adulthood. Femoral geometry, pelvic obliquity, and scoliosis were linked to progression of hip displacement. A combined data pool of 3366 children from Australian hip surveillance databases supported the effectiveness of the 2008 Consensus Statement to identify hip displacement early. The survey of orthopaedic surgeons supported findings of the systematic review and database analyses. INTERPRETATION: This review rationalized changes to the revised and renamed Australian Hip Surveillance Guidelines for Children with Cerebral Palsy 2014, informing frequency of radiographic examination in lower risk groups and continuation of surveillance into adulthood for adolescents with identified risk factors.

Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy.

PURPOSE: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method. MATERIALS AND METHODS: Assessment tools were identified by literature review. Their measurement properties were rated using the COnsensus based standards for the Selection of health Measurement INstruments. The CP specific Feasibility Rating Tool was developed and used to rate the tools. RESULTS: Fifty-seven chronic pain assessment tools were identified. Six have content validity for CP, four of these use proxy-report. Forty-two tools were considered feasible for people with CP; 24 self report and 18 observational/proxy-report. Only the Paediatric Pain Profile has content validity and feasibility for people with CP unable to self-report. CONCLUSIONS: There are few valid, reliable and feasible tools to assess chronic pain in CP. Further research is required to modify tools to enable people with cognitive limitations and/or complex communication to self-report pain.

Few of the existing chronic pain assessment tools are feasible or valid to use with all young people with cerebral palsy (CP).Modifications to self-report tools are needed to improve access for young people who have cognitive impairment or use alternative and augmentative communication.The pain assessment tool with the strongest feasibility and measurement properties for young people who cannot self-report is the Paediatric Pain Profile.Clinicians will need to consider a range of chronic pain assessment tools to assess the biopsychosocial domains important to young people with cerebral palsy.

Can RESPiratory hospital Admissions in children with cerebral palsy be reduced? A feasibility randomised Controlled Trial pilot study protocol (RESP-ACT).

INTRODUCTION: The most common cause of morbidity and mortality in children with severe cerebral palsy (CP) is respiratory disease. BREATHE-CP (Better REspiratory and Airway Treatment and HEalth in Cerebral Palsy) is a multidisciplinary research team who have conducted research on the risk factors associated with CP respiratory disease, a systematic review on management and a Delphi study on the development of a consensus for the prevention and management of respiratory disease in CP. These strategies have not been investigated; therefore, it is not known if implementation is feasible, if they improve patient outcomes or if they are acceptable for families. METHODS AND ANALYSIS: Mixed-method feasibility pilot randomised controlled trial with economic analysis. Twenty children with CP aged 0-12 years who are at risk of respiratory disease will be followed up for 1 year. All children will receive baseline assessments for comparison. The control group will receive usual care from their treating teams. The intervention group will receive comprehensive assessments from physiotherapy, speech pathology and respiratory medicine. An individualised investigation and treatment plan will then be made. Participants in both groups will complete fortnightly patient-reported outcome surveys to assess symptoms and health service use. Analysis will include assessments of acceptability through qualitative interviews, implementation by ability to recruit, randomise and retain, practicality including costs of intervention and hospitalisation, and explore efficacy through quality-of-life surveys and decreased health service use for respiratory-related symptoms. ETHICS AND DISSEMINATION: Ethics and governance approvals have been obtained through Child and Adolescent Health Service Human Research Ethics Committee. At completion, this study will lead to the design of the definitive protocol to test intervention efficacy that maximises recruitment, retention and adherence to interventions. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12620000114943).

Effect of targeted movement interventions on pain and quality of life in children with dyskinetic cerebral palsy: a pilot single subject research design to test feasibility of parent-reported assessments.

PURPOSE: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention. MATERIAL AND METHODS: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up. RESULTS: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases. CONCLUSIONS: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.

Intervention Mapping of a Gamified Therapy Prescription App for Children With Disabilities: User-Centered Design Approach.

BACKGROUND: Mobile health (mHealth) apps for children are increasing in availability and scope. Therapy (physiotherapy, speech pathology, and occupational therapy) prescription apps to improve home or school program adherence work best when developed to be highly engaging for children and when they incorporate behavior change techniques (BCTs) within their design. OBJECTIVE: The aim of this study was to describe the development of a user-centered therapy prescription app for children (aged 6-12 years) with neurodevelopmental disabilities (eg, cerebral palsy, autism spectrum disorder, and intellectual disability) incorporating intervention mapping (IM) and gamified design. METHODS: We used an iterative, user-centered app development model incorporating the first 3 steps of IM. We conducted a needs analysis with user feedback from our previous mHealth app study, a literature review, and a market audit. Change objectives were then specified in alignment with the psychological needs of autonomy, competence, and relatedness identified in self-determination theory. From these objectives, we then selected BCTs, stipulating parameters for effectiveness and how each BCT would be operationalized. A gamification design was planned and implemented focusing on maximizing engagement in children. In total, 2 rounds of consultations with parents, teachers, and therapists and 1 round of prototype app testing with children were conducted to inform app development, with a final iteration developed for further testing. RESULTS: The IM process resulted in the specification of app elements, self-determination theory-informed BCTs, that were embedded into the app design. The gamification design yielded the selection of a digital pet avatar with a fantasy anime visual theme and multiple layers of incentives earned by completing prescribed therapy activities. Consultation groups with professionals working with children with disabilities (4 therapists and 3 teachers) and parents of children with disabilities (n=3) provided insights into the motivation of children and the pragmatics of implementing app-delivered therapy programs that informed the app development. User testing with children with disabilities (n=4) highlighted their enthusiasm for the app and the need for support in the initial phase of learning the app. App quality testing (Mobile Application Rating Scale-user version) with the children yielded means (out of 5) of 4.5 (SD 0.8) for engagement, 3.3 (SD 1.6) for function, 3.3 (SD 1.7) for aesthetics, and 4.3 (SD 1.1) for subjective quality. CONCLUSIONS: mHealth apps designed for children can be greatly enhanced with a systematic yet flexible development process considering the specific contextual needs of the children with user-centered design, addressing the need for behavior change using the IM process, and maximizing engagement with gamification and strong visual design.

Australian hip surveillance guidelines at 10 years: New evidence and implementation.

Optimum management of hip displacement in children with cerebral palsy (CP) is facilitated by an approach that focuses on anticipatory and preventive measures. Hip surveillance programs for children with CP were developed at the beginning of the new millennium, with the purpose of identifying hip displacement sufficiently early to permit a choice of effective management options. In the early years, hip surveillance was guided by epidemiological analysis of population-based studies of prevalence. In Australia, a National Hip Surveillance in CP Working Group was first convened in 2005. This resulted in a 2008 Consensus Statement of recommendations published and endorsed by Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM). The group undertook that the recommendations should be reviewed every 5 years to ensure currency and congruency with the emerging evidence base. As new evidence became available, hip surveillance guidelines developed, with the most recent 2020 Australian Hip Surveillance Guidelines endorsed by the AusACPDM. Implementing comprehensive hip surveillance programs has now been shown to improve the natural history of hip dislocations and improve quality of life. Standardised hip surveillance programs can also facilitate planning for multicentre research through harmonisation of data collection. This, in turn, can help with the identification of robust new evidence that is based on large cohort or population studies. Here a review of evidence informing the updated 2020 Hip Surveillance Guidelines is presented.