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The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL).The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models.Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011).Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.

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.

OBJECTIVES: Cerebral palsy (CP) remains the world's most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. The PREDICT-CP (NHMRC 1077257 Partnership Project: Comprehensive surveillance to PREDICT outcomes for school age children with CP) study will investigate the influence of brain structure, body composition, dietary intake, oropharyngeal function, habitual physical activity, musculoskeletal development (hip status, bone health) and muscle performance on motor attainment, cognition, executive function, communication, participation, quality of life and related health resource use costs. The PREDICT-CP cohort provides further follow-up at 8-12 years of two overlapping preschool-age cohorts examined from 1.5 to 5 years (NHMRC 465128 motor and brain development; NHMRC 569605 growth, nutrition and physical activity). METHODS AND ANALYSES: This population-based cohort study undertakes state-wide surveillance of 245 children with CP born in Queensland (birth years 2006-2009). Children will be classified for Gross Motor Function Classification System; Manual Ability Classification System, Communication Function Classification System and Eating and Drinking Ability Classification System. Outcomes include gross motor function, musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function, communication difficulties, oropharyngeal dysphagia, dietary intake and body composition, participation, parent-reported and child-reported quality of life and medical and allied health resource use. These detailed phenotypical data will be compared with brain macrostructure and microstructure using 3 Tesla MRI (3T MRI). Relationships between brain lesion severity and outcomes will be analysed using multilevel mixed-effects models. ETHICS AND DISSEMINATION: The PREDICT-CP protocol is a prospectively registered and ethically accepted study protocol. The study combines data at 1.5-5 then 8-12 years of direct clinical assessment to enable prediction of outcomes and healthcare needs essential for tailoring interventions (eg, rehabilitation, orthopaedic surgery and nutritional supplements) and the projected healthcare utilisation. TRIAL REGISTRATION NUMBER: ACTRN: 12616001488493.

IntroductionSelective dorsal rhizotomy (SDR) is a neurosurgical intervention intended to permanently reduce spasticity in the lower limbs and improve mobility in selected children with cerebral palsy (CP). Despite SDR having been performed worldwide for the past 30 years, there is moderate quality of evidence that SDR is effective in reducing spasticity with low to very low evidence of its effectiveness in improving gait, function and participation, using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) system. Published studies have described outcomes for groups that differ in selection, surgical technique and postoperative rehabilitation making it difficult for clinicians to use this information to advise families on best management. There is substantial community interest in SDR. A small number of children with CP undergo SDR in Australia each year and some families seek the intervention at international sites. Capturing clinical outcomes and adverse event (AE) data for Australian children undergoing SDR will provide clinicians with information to help guide families considering SDR.Methods and analysisThe Australian SDR Research Registry is a national registry of multidimensional outcomes for Australian children undergoing SDR in an Australian or overseas centre. Data will be collected for up to 10 years following the surgery, to include surgery and admission details, surgical and long-term AEs, and outcome measures across the body structure and functions, activity and participation domains of the International Classification of Functioning, Disability and Health. Data will be collected at baseline, during inpatient admission and at 1, 2, 5 and 10 years post. The aim of collecting these data is to improve understanding of short-, medium- and long-term outcomes and adverse effects of the intervention.Ethics and disseminationThis study was approved by the individual Human Research and Ethics committees at the five Australian tertiary hospitals involved. Results will be disseminated via peer-reviewed publications and conference presentations.Trial registration numberACTRN12618000985280; Pre-results.

The 'Consensus Statement on Hip Surveillance for Children with Cerebral Palsy: Australian Standards of Care' ('Standards of Care') provides a clear and concise guideline for inclusion of hip surveillance into current services. The 'Standards of Care' have been developed by a multidisciplinary working group for the education and information of all health professionals working with children with CP and their families. The 'Standards of Care' were developed through extensive review of the literature and garnering of expert opinion from professionals working in the area within Australia and New Zealand. A formalized external consensus process was conducted from 2007 to 2008 and the 'Consensus Statement on Hip Surveillance for Children with Cerebral Palsy: Australian Standards of Care' became the basis for best practice around Australia in 2008. It has been endorsed by The Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM). Prospective longitudinal study will evaluate both effectiveness and cost/benefit outcomes of this recommended hip surveillance standard of care.

This study reports the five-year outcomes of a prospective population-based study of clinical hip surveillance for children with cerebral palsy (CP) according to evidence-based standards of care. Systematic hip surveillance commenced in Queensland, Australia as a state-wide program in 2005. Queensland represents a dispersed population across a large geographical area, creating unique challenges in terms of service delivery. Over five years, 1,115 children with CP were recruited, representing 73% of the expected population based on 1.9 to 2.1 per 1,000 live births. Standardized clinical and radiological assessments have been provided, with a median follow-up of 1.2 years (range 1 month -5(+8) yrs). Of the 1,115 children, 423 (38%) have been discharged and 692 (62%) remain on surveillance with 314 (28%) identified as having hip displacement with Migration Percentage (MP) equal to or greater than 30% (≥ 30). The incidence of marked hip displacement (MP ≥ 30) was directly related to gross motor function, classified according to the gross motor function classification system (GMFCS), with distribution of GMFCS I=10, (3%), II=40 (13%), III=53 (43%), IV=96 (59%), and V=115 (64%). This state-wide surveillance program has been successful in correctly identifying children with hip displacement (MP ≥ 30), fast tracking children for orthopedic review and discharging those at minimal risk. No child has progressed to dislocation while on surveillance without orthopedic review.

Progressive hip displacement is the second most common deformity in children with cerebral palsy (CP). For many decades, the methods of monitoring hip health and development in children with CP varied widely between facilities. Recently, systematic population based studies have identified some of the factors and characteristics of children with CP who would most benefit from hip surveillance. Health services providing hip surveillance within Australia identified a need for clinical guidelines to assist in provision of comprehensive and best practice health care for children with CP across all patient demographics. Guidelines providing clear, evidence based information on specific timing for commencement, frequency, and discharge have not previously been published. This article analyses the supportive evidence for comprehensive hip surveillance, discusses the development of draft guidelines in Australia, and describes the process for achieving national consensus resulting in the Consensus Statement on Hip Surveillance for Children with Cerebral Palsy: Australian Standards of Care. These standards of care are being followed in clinical facilities across Australia and are endorsed by the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM).

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.

Cerebral palsy (CP) results from a static brain lesion during pregnancy or early life and remains the most common cause of physical disability in children (1 in 500). While the brain lesion is static, the physical manifestations and medical issues may progress resulting in altered motor patterns. To date, there are no prospective longitudinal studies of CP that follow a birth cohort to track early gross and fine motor development and use Magnetic Resonance Imaging (MRI) to determine the anatomical pattern and likely timing of the brain lesion. Existing studies do not consider treatment costs and outcomes. This study aims to determine the pathway(s) to motor outcome from diagnosis at 18 months corrected age (c.a.) to outcome at 5 years in relation to the nature of the brain lesion (using structural MRI). This prospective cohort study aims to recruit a total of 240 children diagnosed with CP born in Victoria (birth years 2004 and 2005) and Queensland (birth years 2006–2009). Children can enter the study at any time between 18 months to 5 years of age and will be assessed at 18, 24, 30, 36, 48 and 60 months c.a. Outcomes include gross motor function (GMFM-66 & GMFM-88), Gross Motor Function Classification System (GMFCS); musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function (Manual Ability Classification System), communication difficulties using Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP), participation using the Paediatric Evaluation of Disability Inventory (PEDI), parent reported quality of life and classification of medical and allied health resource use and determination of the aetiology of CP using clinical evaluation combined with MRI. The relationship between the pathways to motor outcome and the nature of the brain lesion will be analysed using multiple methods including non-linear modelling, multilevel mixed-effects models and generalised estimating equations. This protocol describes a large population-based study of early motor development and brain structure in a representative sample of preschool aged children with CP, using direct clinical assessment. The results of this study will be published in peer reviewed journals and presented at relevant international conferences. Australia and New Zealand Clinical Trials Register ( ACTRN1261200169820 )

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