The cost of respiratory hospitalizations in children with cerebral palsy.

AIM: To establish the burden of respiratory illness in cerebral palsy (CP) on the Western Australian health care system by quantifying the costs of respiratory hospitalizations in children with CP, compared with non-respiratory hospitalizations. METHOD: A 2-year (2014-2015) retrospective study using linked hospital data (excluding emergency department visits), in a population of children with CP in Western Australia aged 18 years and under (median age at hospitalization 7 years; interquartile range 5-12 years). RESULTS: In 671 individuals (57% male) there were 726 emergency hospitalizations, and 1631 elective hospitalizations. Although there were more elective hospitalizations, emergency hospitalizations were associated with longer stays in hospital, and more days in an intensive care unit, resulting in a higher total cost of emergency hospitalizations than elective hospitalizations (total costs: emergency AU$7 748 718 vs elective AU$6 738 187). 'Respiratory' was the leading cause of emergency hospitalizations, contributing to 36% of all emergency admission costs. For a group of high-cost inpatient users (top 5% of individuals with the highest total inpatient costs) the most common reason for hospitalization was 'respiratory'. Where non-respiratory admissions were complicated by an additional respiratory diagnosis, length of stay was greater. INTERPRETATION: Respiratory hospitalizations in CP are a significant driver of health care costs. In the paediatric group, they are a burden for a subgroup of children with CP. WHAT THIS PAPER ADDS: Respiratory illness is the most costly area for unplanned, emergency hospitalizations for children and young people with cerebral palsy. The top 5% of individuals with the highest total inpatient costs account for a disproportionate amount of health care costs.

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.

Prevalence and trends for Aboriginal and Torres Strait Islander children living with cerebral palsy: A birds-eye view.

AIM: To provide a birds-eye view of the trends of cerebral palsy (CP) for Australian Aboriginal and Torres Strait Islander children and young adults. METHOD: Data were obtained for this population-based observational study from the Australian Cerebral Palsy Register (ACPR), birth years 1995 to 2014. The Indigenous status of children was classified by maternal Aboriginal and Torres Strait Islander or non-Indigenous status. Descriptive statistics were calculated for socio-demographic and clinical characteristics. Prenatal/perinatal and post-neonatal birth prevalence was calculated per 1000 live births and per 10 000 live births respectively, and Poisson regression used to assess trends. RESULTS: Data from the ACPR were available for 514 Aboriginal and Torres Strait Islander individuals with CP. Most children could walk independently (56%) and lived in urban or regional areas (72%). One in five children lived in socioeconomically disadvantaged remote/very remote areas. The birth prevalence of prenatal/perinatal CP declined after the mid-2000s from a high of 4.8 (95% confidence interval 3.2-7.0) to 1.9 per 1000 live births (95% confidence interval 1.1-3.2) (2013-2014), with marked declines observed for term births and teenage mothers. INTERPRETATION: The birth prevalence of CP in Aboriginal and Torres Strait Islander children in Australia declined between the mid-2000s and 2013 to 2014. This birds-eye view provides key stakeholders with new knowledge to advocate for sustainable funding for accessible, culturally safe, antenatal and CP services. WHAT THIS PAPER ADDS: Birth prevalence of cerebral palsy (CP) is beginning to decline for Aboriginal and Torres Strait Islanders. Recent CP birth prevalence for Aboriginal and Torres Strait Islanders is 1.9 per 1000 live births. Most children with CP live in more populated areas rather than remote or very remote areas. One in five Aboriginal and Torres Strait Islander children with CP live in socioeconomically disadvantaged remote areas.

Australian guidelines for the management of children with achondroplasia.

Achondroplasia is the most common form of skeletal dysplasia. In addition to altered growth, children and young people with achondroplasia may experience medical complications, develop and function differently to others and require psychosocial support. International, European and American consensus guidelines have been developed for the management of achondroplasia. The Australian focused guidelines presented here are designed to complement those existing guidelines. They aim to provide core care recommendations for families and clinicians, consolidate key resources for the management of children with achondroplasia, facilitate communication between specialist, local teams and families and support delivery of high-quality care regardless of setting and geographical location. The guidelines include a series of consensus statements, developed using a modified Delphi process. These statements are supported by the best available evidence assessed using the National Health and Medicine Research Council's criteria for Level of Evidence and their Grading of Recommendations Assessment, Development and Evaluation (GRADE). Additionally, age specific guides are presented that focus on the key domains of growth, medical, development, psychosocial and community. The guidelines are intended for use by health professionals and children and young people with achondroplasia and their families living in Australia.

Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline.

AIM: To provide recommendations for interventions to improve physical function for children and young people with cerebral palsy. METHOD: An expert panel prioritized questions and patient-important outcomes. Using Grading of Recommendations Assessment, Development and Evaluation (GRADE) methods, the panel assessed the certainty of evidence and made recommendations, with international expert and consumer consultation. RESULTS: The guideline comprises 13 recommendations (informed by three systematic reviews, 30 randomized trials, and five before-after studies). To achieve functional goals, it is recommended that intervention includes client-chosen goals, whole-task practice within real-life settings, support to empower families, and a team approach. Age, ability, and child/family preferences need to be considered. To improve walking ability, overground walking is recommended and can be supplemented with treadmill training. Various approaches can facilitate hand use goals: bimanual therapy, constraint-induced movement therapy, goal-directed training, and cognitive approaches. For self-care, whole-task practice combined with assistive devices can increase independence and reduce caregiver burden. Participation in leisure goals can combine whole-task practice with strategies to address environmental, personal, and social barriers. INTERPRETATION: Intervention to improve function for children and young people with cerebral palsy needs to include client-chosen goals and whole-task practice of goals. Clinicians should consider child/family preferences, age, and ability when selecting specific interventions.

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.

State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy.

PURPOSE OF REVIEW: Cerebral palsy is the most common physical disability of childhood, but the rate is falling, and severity is lessening. We conducted a systematic overview of best available evidence (2012-2019), appraising evidence using GRADE and the Evidence Alert Traffic Light System and then aggregated the new findings with our previous 2013 findings. This article summarizes the best available evidence interventions for preventing and managing cerebral palsy in 2019. RECENT FINDINGS: Effective prevention strategies include antenatal corticosteroids, magnesium sulfate, caffeine, and neonatal hypothermia. Effective allied health interventions include acceptance and commitment therapy, action observations, bimanual training, casting, constraint-induced movement therapy, environmental enrichment, fitness training, goal-directed training, hippotherapy, home programs, literacy interventions, mobility training, oral sensorimotor, oral sensorimotor plus electrical stimulation, pressure care, stepping stones triple P, strength training, task-specific training, treadmill training, partial body weight support treadmill training, and weight-bearing. Effective medical and surgical interventions include anti-convulsants, bisphosphonates, botulinum toxin, botulinum toxin plus occupational therapy, botulinum toxin plus casting, diazepam, dentistry, hip surveillance, intrathecal baclofen, scoliosis correction, selective dorsal rhizotomy, and umbilical cord blood cell therapy. We have provided guidance about what works and what does not to inform decision-making, and highlighted areas for more research.

Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index.

BACKGROUND: Likely duration of survival of children described as having cerebral palsy is of considerable interest to individuals with cerebral palsy, their families, carers, health professionals, health economists and insurers. The aim of this paper is to describe patterns of survival and mortality to the sixth decade in a geographically defined population of people with cerebral palsy stratified according to the clinical description of their impairments in early childhood. METHODS: Identifiers of persons born in Western Australia 1956-2011, registered with cerebral palsy on the Western Australian Register of Developmental Anomalies and surviving at least 12 months, were linked to the Australian National Death Index in December 2014. Patterns of mortality were investigated using survival analysis methods. RESULTS: Of 3185 eligible persons, 436 (13.7%) had died. Of that sample the 22% with the mildest impairment had survival patterns similar to the general population. Mortality increased with increasing severity of impairment. Of 349 (75%) with available cause of death data, 58.6% were attributed to respiratory causes, including 171 (49%) to pneumonia at a mean age of 14.6 (sd 13.4) years of which 77 (45%) were attributed to aspiration. For the most severely impaired, early childhood mortality increased in succeeding decades of birth cohorts from 1950s to 1990 with 20% dying by 4 years of age in the 1981-1990 birth cohort; it then decreased for subsequent birth cohorts, 20% mortality not being attained until 15 years of age. However by 20 years of age mortality of the most severely impaired born in the 1991-2000 birth cohort exceeded that of all other birth cohorts. Remaining life expectancies by age to 50 years have been estimated for two strata with more severe impairments. CONCLUSION: For 22% of individuals with cerebral palsy with mild impairment survival to 58 years is similar to that of the general population. Since 1990 mortality for those with severe cerebral palsy in Western Australia has tended to shift from childhood to early adulthood.

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.

The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis.

AIM: Mental health conditions and problems are often reported in children and adolescents with cerebral palsy (CP). A systematic review was undertaken to describe their prevalence. METHOD: MEDLINE and PsycINFO databases from 1996 to 2016 were searched and reference lists of selected studies were reviewed. Studies were included if they reported point prevalence of mental health diagnoses or symptoms in a general population of children and/or adolescents with CP. Pooled prevalence for mental health symptoms was determined using a random effects meta-analysis. RESULTS: Of the 3158 studies identified, eight met the inclusion criteria. Mental health disorders were diagnosed by psychiatric interview in one study, giving a prevalence of 57% (32 out of 56 children). The remaining seven studies (n=1715 children) used parent-report mental health screening tools. The pooled prevalence for mental health symptoms using the Strengths and Difficulties Questionnaire (n=5 studies) was 35% (95% confidence interval [CI] 20-61) and using the Child Behavior Checklist (n=2 studies) was 28% (95% CI 22-36). Evidence was characterized by a moderate level of bias. INTERPRETATION: More studies are needed to ascertain the prevalence of mental health disorders. Mental health symptoms are common and mental health evaluations should be incorporated into multidisciplinary assessments for these children. WHAT THIS PAPER ADDS: Children with cerebral palsy and intellectual disability have a higher risk of mental health symptoms. The prevalence of mental health symptoms for age and severity groups is unclear.

Intervenções para promover função física de crianças e jovens com paralisia cerebral: diretriz internacional de prática clínica.

OBJETIVO: Fornecer recomendações de intervenções para promoção da função física de crianças e jovens com paralisia cerebral. MÉTODO: Um painel de especialistas priorizou perguntas e desfechos importantes para o paciente. Usando o Grading of Recommendations Assessment, Development and Evaluation (GRADE), o painel avaliou a certeza das evidências e fez recomendações, com consultoria de especialistas internacionais e consumidores. RESULTADOS: A diretriz compreende 13 recomendações (informadas por três revisões sistemáticas, 30 estudos randomizados e cinco estudos pré-pós). Para alcance de objetivos funcionais, recomenda-se que a intervenção inclua objetivos escolhidos pelo cliente, prática completa da tarefa em ambientes da vida real, suporte para empoderar as famílias e uma abordagem em equipe. Idade, habilidade e preferências da criança/família precisam ser consideradas. Para melhora da habilidade da marcha, recomenda-se marcha no solo, que pode ser complementada com treinamento em esteira. Várias abordagens podem facilitar os objetivos relacionados ao uso das mãos: terapia bimanual, terapia de contensão induzida, treino direcionado a objetivos e abordagens cognitivas. Para auto-cuidado, prática da tarefa completa, combinada com recursos assistivos podem aumentar a independência e reduzir a sobrecarga do cuidador. A participação em objetivos de lazer pode combinar prática da tarefa completa com estratégias direcionadas para barreiras ambientais, pessoais e sociais. INTERPRETAÇÃO: Intervenção para promoção da função de crianças e jovens com paralisia cerebral precisa incluir objetivos escolhidos pelo cliente e a prática da tarefa completa dos objetivos. Os clínicos devem considerar as preferências da criança/família, idade e habilidade ao selecionarem intervenções específicas.

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.

Paediatric neurological melioidosis: a rehabilitation case report.

CONTEXT: Melioidosis is a rare condition, endemic to northern Australia and south-east Asia, caused by an infection from the bacteria Burkholderia pseudomallei. The largest epidemiological review to date describes 540 cases of melioidosis seen at Darwin Hospital, in northern Australia, over a 20-year period. Of these, 14 (less than 3%) presented with neurological manifestation, with three deaths. Reports of paediatric cases of melioidosis are rarer. In a review of paediatric cases in northern Australia only eight cases were identified in 10 years. Three of these patients presented with neurological melioidosis, of whom two died in hospital. ISSUES: Whilst the literature refers to prolonged periods of hospitalisation for survivors, the trajectory of functional recovery and process of rehabilitation has not been described. This is a case report describing a 14-year-old boy who presented to a remote medical post with acute neurological symptoms (vomiting, severe headache, ataxia, cranial nerve VI and VII palsy) and was referred to the tertiary paediatric hospital in Perth, Western Australia. Cranial magnetic resonance imaging showed an extensive infiltrative lesion in the posterior fossa and hydrocephalus. Diagnosis of neurological melioidosis required isolation of the pathogen by brain biopsy through sub-occipital craniotomy. Medical treatment included surgical management of hydrocephalus, parenteral antibiotic treatment with meropenem and then a prolonged course of oral co-trimoxazole, enteral feeding and tonal management with levodopa-carbidopa and botulinum toxin A injections. Associated neurological signs and symptoms (bradykinesia, tremor, dysphagia, aphasia, hypertonia, exotropia) required intensive rehabilitation to address functional deficits and to promote independence. The purpose of this case report is to document the functional recovery and rehabilitation process of a paediatric case of neurological melioidosis. Knowledge of the recovery pathway is important to add to the understanding of natural history and treatment of this rare disease. LESSONS LEARNED: Occasions of service and functional assessments were recorded prospectively. Inpatient therapy (932 hours, with 934 occasions of service) was delivered across physiotherapy, occupational therapy and speech pathology over 9 months of an inpatient admission. Initial paediatric functional independence measure (WeeFIM) was 18/126, indicating complete dependence in all physical and cognitive domains. Following 9 months of intensive rehabilitation the WeeFIM was 53/126, indicating significant residual disability. This proved to be a challenge for discharge planning back to a remote region of Western Australia. Paediatric neurological melioidosis can lead to significant disability and long-term dependence, despite the provision of lengthy intensive rehabilitation. This case report highlights the challenges and complexity of the rehabilitation services required to optimise outcomes for this patient and achieve a safe discharge to a remote community where limited support services are available.

Sleep concerns in children and young people with cerebral palsy in their home setting.

AIMS: The aims were to identify in-home concerns about sleep in children and young people with cerebral palsy (CP) across age and Gross Motor Function Classification Scale (GMFCS) levels. METHODS: This was a retrospective review of clinical notes of 154 children and young people with CP, aged 1-18 years (M = 7.8; standard deviation = 5.4) who received a home-based sleep service. Reported concerns were synthesised, for analysis according to age groups (1-5, 6-13, 14-18) and GMFCS levels. RESULTS: Sixteen factors of concern were derived from the home-based assessment reports. Most children and young people had multiple factors of concern. These varied across age groups and GMFCS levels. Body position was of concern across all age groups, for over 90% at GMFCS levels IV and V, and for 10% at GMFCS level I. Settling routines were of concern for more than 90% at GMFCS levels I and II, but for less than 50% at GMFCS levels IV and V. Settling routines were of concern to over 65% of those under 6 years but less than 25% of those over 14 years. Conversely, pain and pressure care concerned less than 10% of children under 6, and more than 35% of those over 14 years. CONCLUSIONS: Concerns about sleep vary across ages and GMFCS levels of children and young people with CP. Concerns relate to impairment of body structure and function, activity, environment, and personal supports. Multi-disciplinary, home-based assessment and interventions are recommended to address these concerns.

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).