A prospective assessment of readiness to implement an early detection of cerebral palsy pathway in a neonatal intensive care setting using the PARIHS framework.

BACKGROUND: Early detection of cerebral palsy (CP) is possible through targeted use of assessment tools. Changes in practice are needed to facilitate this shift towards earlier diagnosis of CP in New Zealand. The aim of this study was to prospectively evaluate readiness to implement an early detection of CP pathway within a level 3 neonatal intensive care unit (NICU) setting prior to any implementation taking place. The PARIHS (Promoting Action on Research Implementation in Health Services) framework was engaged to assess readiness by highlighting determinants that influence implementation outcomes as either barriers or enablers. METHODS: A mixed methods approach was used. Firstly, an online staff survey assessed PARIHS sub-elements using Likert scores and free text with the intent to develop a baseline understanding of staff views. Secondly, focus groups were conducted to gain deeper understanding of barriers and enablers to implementation. Participants included health professionals involved in the first 6 months of life. Data were analysed to outline the barriers and enablers of implementation under the Evidence and Context constructs of the PARIHS framework. RESULTS: Twenty-seven participants completed the survey, and 20 participants participated in eight focus groups and two individual interviews. Quantitative (survey) findings found 65% agreement around the usefulness of research evidence on early CP detection; however, ≤ 45% felt current resources (i.e. human, financial and IT) were sufficient for implementation. Qualitative findings (survey and focus groups) highlighted key staff concerns around resources, family impact (creating unnecessary stress), and equity (barriers to participation). Staff wanted information regarding how international evidence translates to the local context and availability of timely follow-up services. Sub-elements within the Evidence and Context constructs were rated as either mixed or low (except for Evidence - Research, rated as high), overall indicating that Auckland NICU is at the early stages of readiness to implement the early CP detection pathway. CONCLUSION: This work may resonate with other neonatal services preparing to implement CP early detection pathways. Resourcing has a major role in facilitating implementation of pathways and uncertainty about resources is a barrier to implementation. Ongoing focus on building consensus and funding is required to ensure optimal uptake.

Prioritized strategies to improve diagnosis and early management of cerebral palsy for both Maori and non-Maori families.

AIM: To identify prioritized strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy (CP) for both Maori and non-Maori individuals. METHOD: Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management of CP. Health design researchers facilitated two 'discovery' (sharing experiences and ideas) and two 'prototyping' (solution-focused) workshops in Aotearoa, New Zealand. A Maori health service worker co-facilitated workshops for Maori families. RESULTS: Between 7 and 13 participants (14 health care professionals, 12 parents of children with CP across all functional levels) attended each workshop. The discovery workshops revealed powerful stories about early experiences and needs within clinician-family communication and service provision. The prototyping workshops revealed priorities around communication, and when, what, and how information is provided to families; recommendations were co-created around what should be prioritized within a resource to aid health care navigation. INTERPRETATION: There is a critical need for improved communication, support, and guidance, as well as education, for families navigating their child with CP through the health care system. Further input from families and health care professionals partnering together will continue to guide strategies to improve health care service delivery using experiences as a mechanism for change.

Sex differences in linear bone measurements occur following puberty but do not influence femoral or tibial torsion.

Torsional, angular, and linear measurements in a paediatric population are clinically important but not well defined and understood. Different methods of measurement and discrepancies between assessors leads to a lack of understanding of what should be defined as typical or atypical for the growing skeleton. From a large dataset of 333 paediatric CT scans, we extracted three-dimensional torsional, angular, and linear measurements from the pelvis, femur, and tibia/fibula. Sex differences in linear measurements were observed in bones of children aged 13+ (around puberty), but femoral and tibial torsion were similar between males and females. The rotational profile (femoral anteversion minus tibial torsion) tended to increase with growth. Epicondylar, condylar, and malleolar widths were smaller in females than males for the same bone length after the age of 13 years, which could explain why females may be more at risk for sport injuries during adolescence. This rich dataset can be used as an atlas for researchers and clinicians to understand typical development of critical rotational profiles and linear bone measurements in children.

The reliability of the measurement of muscle volume using magnetic resonance imaging in typically developing infants by two raters.

To assess intra-rater and inter-rater reliability of the manual segmentation of Magnetic Resonance Imaging (MRI) for the in vivo measurement of infant muscle volume of the knee extensor and flexor muscles by two raters. Muscles of the knee extensor and flexor muscle of ten typically developing infants (86 days ± 7 days) were scanned with MRI (Proton density sequence). Scans were then segmented using Slicer software, and volumes rendered by two raters. Intra-rater and inter-rater reliability were assessed using intra-class correlation (ICC), with mean difference (MD), standard error of the mean (SEM), and minimal detectable change (MDC) for each muscle calculated. ICCs for Intra-rater reliability of the segmentation process for the muscle volume of the muscles of the knee extensors and flexor muscles were 0.901-0.972, and 0.776-0.945 respectively, with inter-rater reliabilities between 0.914-0.954 and 0.848-0.978, for the knee extensor and flexors muscles respectively. For intra-rater reliability, MD ≤ - 0.47 cm3, MDCs for were < 1.09 cm3 and for inter-rater MD ≤ - 1.40 cm3, MDCs for were < 1.63 cm3 for all muscles. MRI segmentation for muscle volumes showed good to excellent reliability, though given the small volumes of the muscles themselves, variations between raters are amplified. Care should be taken in the reporting and interpretation of infant muscle volume.

Utility of data linkage for orthopaedic service planning in the paediatric population with cerebral palsy at Starship Children's Hospital.

AIMS: To determine the accuracy of orthopaedic surgical procedure coding (ICD-10-AM/ACHI/ACS) for children with cerebral palsy (CP) at Starship Children's Hospital, use data linkage with the New Zealand Cerebral Palsy Register (NZCPR) to obtain demographic and clinical information for children with CP requiring orthopaedic surgical services in the Auckland District Health Board catchment area, and to determine if trends in the clinical and demographic data are useful for future service planning for children with CP. METHODS: Surgical admission data for children with CP aged 0-18 years at the time of their first procedure were extracted from Auckland District Health Board records for 2013-2018, and information on demographics and Gross Motor Function Classification System level were obtained from the NZCPR. The ICD-10-AM/ACHI/ACS codes for surgery/intervention were matched with the operation notes in the electronic health records using NHI numbers and assessed for accuracy. RESULTS: During the study period, 261 paediatric patients with CP underwent orthopaedic procedures, which could be grouped broadly into five categories (spine, upper limb, lower limb, Botulinum-A toxin injection only, and other) with a coding accuracy of 95%. Clinical and demographic data could be obtained from the NZCPR for 232 (88.9%) of the 261 patients. CONCLUSIONS: Using orthopaedic surgical procedure codes, we could identify broad categories of procedures received by children with CP and the demographic and clinical characteristics of these children, which will assist with service planning and identify trends in care delivery.

Prioritizing indigenous health equity in health registers: an environmental scan of strategies for equitable ascertainment and quality data.

BACKGROUND: Cerebral palsy (CP) registers serve as instrumental tools to support development of care pathways, preventative strategies, and health gains. Such health gains, however, are not always universal, with Indigenous health inequities common. To support Indigenous health, health registers need complete, consistent, and high-quality data. The aim of this study was to identify perceived barriers to the ascertainment of Indigenous peoples on health registers and to collate strategies supporting comprehensive ascertainment and achievement of high-quality Indigenous data. METHODS: Environmental scanning methods were utilized within a Kaupapa Maori theoretical framework, which aims to produce research that is transformational and supportive of Indigenous health gain. Knowledge and insights were obtained from CP registers in countries with Indigenous populations and complemented by information from health registers in Aotearoa New Zealand (NZ). Data collection methods included an online survey and scan of organizational websites. Data extraction focused on general information about the register, barriers to ascertainment, and strategies to support ascertainment and high data quality. RESULTS: 52 registers were identified, 20 completed the survey and 19 included in the study (CP registers, n = 10, NZ health registers, n = 9). Web scan data were included for the other 32 registers (CP registers, n = 21, NZ health registers, n = 11). Indigenous health equity was identified in the visions and aims of only two health registers. Ethnicity data collection was identified in nearly three quarters of survey respondents and a limited number of organizational websites. Over half of survey respondents described system, health provider/service, or workforce barriers to ascertainment. Strategies were categorized into collaboration, health provider/service, workforce, and systems-levels. Indigenous-specific strategies were limited and focused on personal behaviour and access to registration. CONCLUSIONS: CP and other health registers can have a significant role in identifying and addressing Indigenous health inequities. However, this is not currently an overt priority for many registers in this study and few registers describe ascertainment and data quality strategies specific to Indigenous peoples. Significant opportunity exists for health registers to be accountable and to implement approaches to support Indigenous health equity, address structural determinants of inequities, and achieve health gain for all.

Neonatal Neuroimaging in Neonatal Intensive Care Graduates Who Subsequently Develop Cerebral Palsy.

Cerebral palsy is a common cause of physical disability. The New Zealand Cerebral Palsy Register (NZCPR) was established in 2015 and reports national data. Internationally, an early CP diagnosis has been a focus, with imaging and clinical tools used to enable early accurate detection. Accordingly, guidelines are being developed for New Zealand, including a specific pathway for high-risk neonatal intensive care (NICU) graduates, reflecting the high rate of CP in this group. To inform this work, we reviewed imaging data from a retrospective NICU cohort identified from the NZCPR. In these 140 individuals with CP and a confirmed NICU admission during 2000-2019 inclusive, imaging frequency, modality, and rate of abnormality was determined. Overall, 114 (81.4%) had imaging performed in the NICU, but the frequency and modality used varied by gestational subgroup. For infants born at less than 32 weeks gestation, 53/55 had routine imaging with ultrasound, and IVH was graded as none or mild (grade 1-2) in 35 or severe (grade 3-4) in 18 infants. For the 34 infants born between 32-36 weeks gestation, only 13/19 imaged in the NICU were reported as abnormal. For 51 term-born infants, 41/42 imaged in the NICU with MRI had abnormal results.

Muscle architecture, growth, and biological Remodelling in cerebral palsy: a narrative review.

Cerebral palsy (CP) is caused by a static lesion to the brain occurring in utero or up to the first 2 years of life; it often manifests as musculoskeletal impairments and movement disorders including spasticity and contractures. Variable manifestation of the pathology across individuals, coupled with differing mechanics and treatments, leads to a heterogeneous collection of clinical phenotypes that affect muscles and individuals differently. Growth of muscles in CP deviates from typical development, evident as early as 15 months of age. Muscles in CP may be reduced in volume by as much as 40%, may be shorter in length, present longer tendons, and may have fewer sarcomeres in series that are overstretched compared to typical. Macroscale and functional deficits are likely mediated by dysfunction at the cellular level, which manifests as impaired growth. Within muscle fibres, satellite cells are decreased by as much as 40-70% and the regenerative capacity of remaining satellite cells appears compromised. Impaired muscle regeneration in CP is coupled with extracellular matrix expansion and increased pro-inflammatory gene expression; resultant muscles are smaller, stiffer, and weaker than typical muscle. These differences may contribute to individuals with CP participating in less physical activity, thus decreasing opportunities for mechanical loading, commencing a vicious cycle of muscle disuse and secondary sarcopenia. This narrative review describes the effects of CP on skeletal muscles encompassing substantive changes from whole muscle function to cell-level effects and the effects of common treatments. We discuss growth and mechanics of skeletal muscles in CP and propose areas where future work is needed to understand these interactions, particularly the link between neural insult and cell-level manifestation of CP.

Indigenous health equity in health register ascertainment and data quality: a narrative review.

BACKGROUND: Health registers play an important role in monitoring distribution of disease and quality of care; however, benefit is limited if ascertainment (i.e., the process of finding and recruiting people on to a register) and data quality (i.e., the accuracy, completeness, reliability, relevance, and timeliness of data) are poor. Indigenous peoples experience significant health inequities globally, yet health data for, and about, Indigenous peoples is often of poor quality. This narrative review aimed to (i) identify perceived barriers for the ascertainment of Indigenous peoples on health registers, and (ii) collate strategies identified and used by health registers to support comprehensive ascertainment and high-quality data for Indigenous peoples. METHODS: A Kaupapa Maori theoretical framework was utilized to guide this work. Four electronic databases were systematically searched for original articles and screened for eligibility. Studies involving health registers with Indigenous population(s) identified were included if either ascertainment or data quality strategies were described. Data extraction focused on the reporting of research involving Indigenous peoples using the CONSIDER checklist domains, ascertainment, and data quality. RESULTS: Seventeen articles were included spanning publication between 1992 and 2020. Aspects of four of eight CONSIDER domains were identified to be included in the reporting of studies. Barriers to ascertainment were themed as relating to 'ethnicity data collection and quality', 'systems and structures', 'health services/health professionals', and 'perceptions of individual and community-level barriers'. Strategies to support ascertainment were categorized as 'collaboration', 'finding people', and 'recruitment processes'. Categorized strategies to support data quality were 'collaboration', 'ethnicity data collection and quality', 'systems-level strategies', and 'health service/health professional-level strategies'. CONCLUSIONS: Poor-quality data for Indigenous peoples in health registers prevents the achievement of health equity and exemplifies inaction in the face of need. When viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly relating to the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. Indigenous led research, meaningful collaboration, and a sharing of knowledge and experiences between health registers is recommended to enable research and health registers that support Indigenous self-determination and health equity.

The reliability and validity of triceps surae muscle volume assessment using freehand three-dimensional ultrasound in typically developing infants.

This study assessed the intra-acquirer, intra- and inter-processor reliability, and validity of the in vivo assessment of the medial gastrocnemius (MG), lateral gastrocnemius (LG) and soleus (SOL) muscle volumes using freehand 3D ultrasound (3DUS) in typically developing infants. Reliability assessments of freehand 3DUS were undertaken in infants across three ages groups: three, six and twelve months of age, with validity testing completed against magnetic resonance imaging (MRI) in infants at 3 months of age. Freehand 3DUS scanning was carried out by a single acquirer, with two independent processors manually segmenting images to render volumes. MRI images were segmented independently by a separate processor, with the volumes compared to those obtained via freehand 3DUS. Reliability was assessed using intraclass correlation (ICC), coefficient of variance (CV) and minimal detectable change (MDC) across each assessment time point. Validity was assessed using the limits of agreement. ICCs for intra-acquirer reliability of the acquisition process for freehand 3DUS ranged from 0.91 to 0.99 across all muscles. ICCs for intra-processor and inter-processor reliability for the segmentation process of freehand 3DUS ranged from 0.80 to 0.98 across all muscles. Acceptable levels of agreement between muscle volume obtained by freehand 3DUS and MRI were found for all muscles; however, freehand 3DUS overestimated muscle volume of MG and LG and underestimate the SOL compared with MRI, with average absolute differences of MG = 0.3 ml, LG = 0.3 ml and Sol = 1.2 ml. Freehand 3DUS is a reliable method for measuring in vivo triceps surae muscle volume in typically developing infants. We conclude that freehand 3DUS is a useful tool to assess changes in muscle volume in response to growth and interventions in infants.

"It Should Have Been Given Sooner, and We Should Not Have to Fight for It": A Mixed-Methods Study of the Experience of Diagnosis and Early Management of Cerebral Palsy.

Listening to the family experience is integral to identifying areas of strength and for improvement in health service delivery around diagnosis and early management of cerebral palsy (CP). Families of children with a diagnosis of CP were invited to complete a purpose-developed electronic survey that included items around the timing of diagnosis, their experiences and satisfaction. It also allowed families to expand on their experiences through free text. Of the 57 families responding, 49% of children functioned at Gross Motor Function Classification System (GMFCS) levels I or II, 8% at GMFCS level III and 23% at GMFCS levels IV or V. 51% of participants were satisfied or very satisfied with the diagnosis experience, 18% were neutral about the experience and 31% were dissatisfied or very dissatisfied. Though the findings of this study may be subject to selection bias, perceived delays in the receipt of diagnosis of CP appeared common with 60% of participants indicating concerns about their child by <6 months of age but only 21% provided with a diagnosis of CP <6 months of age. Approximately 18% of families experienced a delay of more than 12 months. Thirty-four (61%) participants noted a delay between referrals to a service and receipt of service management/therapy. Common themes impacting on families' experience in the diagnosis and health service delivery journey related to provision of information, and the style of communication, with both direct and ongoing communication styles common for greater family satisfaction. Overall, families desired the diagnosis experience to be informative and timely, with early follow up support and assistance with health sector navigation.

How Do Complications Within the First 30 days after Spinal Deformity Surgery in Children with Cerebral Palsy Affect Length of Stay?

BACKGROUND: Surgery for spinal deformity in patients with cerebral palsy is reported to have high perioperative complication rates. However, minor complications are not generally reported and the influence of the varied severity of complications on length of stay is not known. Understanding the risk factors for both minor and major perioperative complications and their effect on length of stay is important information for clinicians who seek to improve care for this group of children. QUESTIONS/PURPOSES: (1) What is the prevalence of postoperative complications in the first 30 days after surgery for spinal deformity in a New Zealand national cohort of children with cerebral palsy using the Clavien-Dindo classification? (2) What are the patient and operative predictive risk factors for minor and major perioperative complications? (3) What is the effect of year of operation on risk of minor and major perioperative complications? (4) What is the effect of perioperative complications on length of stay? METHODS: We conducted a retrospective cohort study, identifying all children in New Zealand with a confirmed diagnosis of cerebral palsy who had surgery for a spinal deformity from January 1997 to January 2018. Two hundred-three patients with cerebral palsy (102 boys) were surgically treated for a spinal deformity, at a mean age of 14 ± 3 years, at one of three centers in New Zealand. Six children had Gross Motor Function Classification System Level II or III, 66 had Gross Motor Function Classification System Level IV, and 131 had Gross Motor Function Classification System Level V. Thirty-day perioperative complications were extracted from the patients' health records and classified according to the Clavien-Dindo system. Univariate and multivariate analyses were performed to identify patient and operative risk factors for complications, and the effect on length of stay. RESULTS: In all, 85% of patients experienced at least one perioperative complication. There were 300 Clavien-Dindo Grade I complications in 141 patients, 156 Clavien-Dindo Grade II complications in 102 patients, 25 Clavien-Dindo Grade III complications in 22 patients, 29 Clavien-Dindo Grade IV complications in 28 patients, and one Clavien-Dindo Grade V complication (death; 0.5%). Univariate analysis showed that multiple independent factors, Gross Motor Function Classification System Level V ability (odds ratio 2.13 [95% confidence interval 1.15 to 3.95]; p = 0.02), seizure disorder (OR 2.27 [95% CI 1.20 to 4.32]; p < 0.01), preoperative Cobb angle of greater than 70° (OR 2.40 [95% CI 1.20 to 4.78]; p < 0.01), and anterior approach to surgery (OR 3.29 [95% CI 1.21 to 8.90]; p = 0.02), were associated with Grade I complications but, of these factors, only the presence of a seizure disorder (OR 2.27 [95% CI 1.20 to 4.32]; p < 0.01) was associated with Grade I complications on multivariate analysis. Previous recurrent respiratory infections predicted an increased risk of Clavien-Dindo Grade II complications (OR 3.6 [95% CI 1.81 to 7.0]; p = 0.03). The presence of a feeding gastrostomy was associated with an increased risk of Clavien-Dindo Grade IV complications (OR 2.6 [95% CI 1.19 to 5.87]; p = 0.02). The year of operation did not influence the frequency of any grade of complication, but the presence of any complication led to an increased length of stay. CONCLUSION: Overall, 85% of patients with cerebral palsy had at least one complication after spinal deformity surgery and 25% had major complications (Grades III, IV, and V), with proportionate increases in the postoperative length of stay. Patient-specific factors aid in the identification of complication risk. LEVEL OF EVIDENCE: Level II, prognostic study.

Clinical practice of health professionals working in early detection for infants with or at risk of cerebral palsy across New Zealand.

AIM: A diagnosis of cerebral palsy (CP) can, and should, be made as early as possible. This work describes current clinical practice around the awareness and use of diagnostic tools for the detection of CP in New Zealand (NZ). METHODS: A purpose-developed survey distributed electronically to NZ clinicians working with young children with or at risk of CP. RESULTS: A total of 159 clinicians (including paediatricians, physiotherapists and occupational therapists) participated in this cross-sectional study. Ninety-six percent were aware that a diagnosis of CP can be made by 12 months of age, with high levels of awareness of the use of magnetic resonance imaging (94%), Prechtl's qualitative assessment of general movements (GMs) (70%) and Hammersmith Infant Neurological Examination (HINE) (77%). Only 40% were aware of the HINE optimality scoring. Fifty-four clinicians provided a diagnosis of CP as part of their role: 48% never used the GMs or HINE to assess children <1 year, and 57% never used the HINE for children between 1 and 2 years. Clinicians not providing a diagnosis within their professional role (n = 104) also indicated infrequent use of assessment tools with 74% and 54% never using the GM's or HINE (respectively) in their assessment of children at risk of CP. Barriers to use included lack of time and funding, lack of clear pathways and management support. CONCLUSION: Despite high awareness, current use of international best practice tools in NZ clinical practice appears low. Multiple barriers are reported to the use of these tools, which need to be addressed to improve the timeliness of diagnosis.

Measuring skeletal muscle morphology and architecture with imaging modalities in children with cerebral palsy: a scoping review.

AIM: To investigate the use of ultrasound and magnetic resonance imaging (MRI) methodologies to assess muscle morphology and architecture in children with cerebral palsy (CP). METHOD: A scoping review was conducted with systematic searches of Medline, Embase, Scopus, Web of Science, PubMed, and PsycInfo for all original articles published up to January 2019 utilizing ultrasound and/or MRI to determine morphological and architectural properties of lower limb skeletal muscle in children with CP. RESULTS: Eighty papers used ultrasound (n=44), three-dimensional ultrasound (n=16), or MRI (n=20) to measure at least one muscle parameter in children and adolescents with CP. Most research investigated single muscles, predominantly the medial gastrocnemius muscle, included children classified in Gross Motor Function Classification System levels I (n=62) and II (n=65), and assessed fascicle length (n=35) and/or muscle volume (n=35). Only 21 papers reported reliability of imaging techniques. Forty-six papers assessed measures of Impairment (n=39), Activity (n=24), and Participation (n=3). INTERPRETATION: Current research study design, variation in methodology, and preferences towards investigation of isolated muscles may oversimplify the complexities of CP muscle but provide a foundation for the understanding of the changes in muscle parameters in children with CP. WHAT THIS PAPER ADDS: Current evidence is biased towards the medial gastrocnemius muscle and more functionally able children with cerebral palsy (CP). Variations in imaging techniques and joint positioning limit comparisons between studies. Clinimetric testing of parameters of CP muscle is not always considered. Assessment of parameter(s) of muscle with measures of participation is sparse.

Variability of total step activity in children with cerebral palsy: influence of definition of a day on participant retention within the study.

BACKGROUND: Activity monitoring is important to establish accurate daily physical activity levels in children with cerebral palsy (CP). However, few studies address issues around inclusion or exclusion of step count data; in particular, how a valid day should be defined and what impact different lengths of monitoring have on retention of participant data within a study. This study assessed how different 'valid day' definitions influenced inclusion of participant data in final analyses and the subsequent variability of the data. RESULTS: Sixty-nine children with CP were fitted with a StepWatch™ Activity Monitor and instructed to wear it for a week. Data analysis used two broad definitions of a day, based on either number of steps in a 24 h monitoring period or the number of hours of recorded activity in a 24 h monitoring period. Eight children either did not use the monitor, or used it for only 1 day. The remaining 61 children provided 2 valid days of monitoring defined as >100 recorded steps per 24 h period and 55 (90 %) completed 2 valid days of monitoring with ≥10 h recorded activity per 24 h period. Performance variability in daily step count was lower across 2 days of monitoring when a valid day was defined as ≥10 h recorded activity per 24 h period (ICC = 0.765) and, higher when the definition >100 recorded steps per 24 h period (ICC = 0.62). Only 46 participants (75 %) completed 5 days of monitoring with >100 recorded steps per 24 h period and only 23 (38 %) achieved 5 days of monitoring with ≥10 h recorded activity per 24 h period. Datasets of participants who functioned at GMFCS level II were differentially excluded when the criteria for inclusion in final analysis was 5 valid days of ≥10 h recorded activity per 24 h period, leaving datasets available for only 8 of 32 participant datasets retained in the study. CONCLUSION: We conclude that changes in definition of a valid day have significant impacts on both inclusion of participant data in final analysis and measured variability of total step count.

The National Disability Insurance Scheme: a time for real change in Australia.

In Australia, the supports and services for persons with disabilities have long been underfunded and fragmented. Often, individuals did not receive the services they needed, but rather the services they were entitled to based on how or when they acquired their disability. As a result, there was an increasing reliance on ageing carers, a lack of permanent and respite accommodation, and reduced employment and educational opportunities. Individuals with disabilities and their families were often isolated and financially disadvantaged. In March 2013, legislation was passed in Australia to establish a National Disability Insurance Scheme, a radical new way of funding disability services. No longer would funding be directed to agencies, but rather to individuals who would make their own plan and select their preferred services and service providers, giving them more control over the services and supports they receive. The hope is that this change from a welfare-driven to an insurance-based model will improve equity of service delivery, levels of participation, and overall quality of life among Australians with disabilities and their families.

A cross-sectional study examining computer task completion by adolescents with cerebral palsy across the Manual Ability Classification System levels.

AIM: The aim of this study was to analyze the cursor trajectories of adolescents with cerebral palsy (CP) when using a mouse for point-and-click computer tasks. By identifying some of the factors limiting cursor movement and gaining a better understanding of human movement, it will be possible to design more accessible computer interfaces. METHOD: This study evaluated cursor trajectories of 29 individuals with bilateral CP who had different levels of upper limb function as measured by the Manual Ability Classification System, and compared the results with those of 12 adolescents with typical development. RESULTS: Among adolescents with typical development, movement time increases linearly as the index of difficulty increases (Fitts' law); however, this linearity was not apparent in adolescents with bilateral CP. INTERPRETATION: Interfaces for members of the population are designed around Fitts' law, with low precision requirements at indices of difficulty lower than 4. We found that interactive displays for adolescents with CP should be limited to an index of difficulty of 2.

How does the functional mobility scale relate to capacity-based measures of walking ability in children and youth with cerebral palsy?

This study examined the relationship between walking performance rated on the Functional Mobility Scale (FMS) and measures of walking capacity in children with cerebral palsy (CP). A total of 143 participants with spastic CP (GMFCS levels I to III) were rated on the FMS and had assessment of self-selected walking speed (WS), fast 1 minute walk test (1MWT) and six minute walk test (6MWT). For each FMS distance, children rated 6 had significantly better 6MWT than children scored 5; children rated FMS 2, 3, or 4 had lower walking capacity measures but were not clearly distinguishable from each other. The 6MWT was an independent predictor of variation in FMS score, accounting for 20% to 27% of the variance across the three FMS distances. While walking capacity impacts on community mobility in children with CP much of the variance remains unexplained, suggesting that other factors play an important role.

Walking drawings and walking ability in children with cerebral palsy.

OBJECTIVES: To investigate whether drawings of the self walking by children with cerebral palsy (CP) were associated with walking ability and illness perceptions. METHOD: This was an exploratory study in 52 children with CP (M:F = 28:24), mean age 11.1 years (range 5-18), who were attending tertiary level outpatient clinics. Children were asked to draw a picture of themselves walking. Drawing size and content was used to investigate associations with clinical walk tests and children's own perceptions of their CP assessed using a CP version of the Brief Illness Perception Questionnaire. RESULTS: Larger drawings of the self were associated with less distance traveled, higher emotional responses to CP, and lower perceptions of pain or discomfort, independent of age. A larger self-to-overall drawing height ratio was related to walking less distance. Drawings of the self confined within buildings and the absence of other figures were also associated with reduced walking ability. CONCLUSION: Drawing size and content can reflect walking ability, as well as symptom perceptions and distress. Drawings may be useful for clinicians to use with children with cerebral palsy to aid discussion about their condition.

Children's perceptions of their cerebral palsy and their impact on life satisfaction.

PURPOSE: To assess an individual child's cognitive and emotional perceptions of their cerebral palsy (CP) and how these are associated with their reported life satisfaction and their functional walking ability. METHOD: Convenience sample of 48 children with cerebral palsy, GMFCS (Gross Motor Function Classification System) I-IV, mean age of 12.2 ± 2.5 years was recruited from tertiary level out-patient clinics. All children completed the Brief Illness Perception Questionnaire-Cerebral Palsy version (BIPQ-CP), Students' Life Satisfaction Scale (SLSS) and 1- and 6-min walk tests. RESULTS: Children with CP reported levels of global life satisfaction (mean score 31.4/42) equivalent to previous studies of typically developing children. Higher total SLSS scores were associated with lower concern about CP (rho = -0.61, p < 0.001), lower emotional impact (rho = -0.58, p < 0.001), fewer perceived consequences (rho = -0.53, p < 0.001) and perceptions of higher levels of personal control (rho = 0.40, p = 0.01). Multiple regression models using BIPQ-CP constructs found that a combination of lower level of concern and fewer perceived consequences predicted 46% of the variance in SLSS score (p < 0.001). GMFCS levels, walk distance and age were not significant predictors of life satisfaction. CONCLUSIONS: Life satisfaction in this group of children was strongly associated with a child's perceptions of their CP but was not associated with functional walking ability. Although the cross-sectional nature of the study precludes assumptions of causality, understanding children's cognitive and emotional beliefs about their cerebral palsy would seem to be an important adjunct to clinical management.