Cerebral palsy in Australia: birth prevalence, 1995-2016, and differences by residential remoteness: a population-based register study.

OBJECTIVE: To examine recent changes in the birth prevalence of cerebral palsy in Australia; to examine the functional mobility of children with cerebral palsy by residential remoteness. STUDY DESIGN: Population-based register study; analysis of Australian Cerebral Palsy Register (ACPR) data. SETTING, PARTICIPANTS: Children with cerebral palsy born in Australia, 1995-2016, and included in the ACPR at the time of the most recent state/territory data provision (31 July 2022). MAIN OUTCOME MEASURES: Change in birth prevalence of cerebral palsy, of cerebral palsy acquired pre- or perinatally (in utero to day 28 after birth), both overall and by gestational age group (less than 28, 28-31, 32-36, 37 or more weeks), and of cerebral palsy acquired post-neonatally (day 29 to two years of age); gross motor function classification by residential remoteness. RESULTS: Data for 10 855 children with cerebral palsy born during 1995-2016 were available, 6258 of whom were boys (57.7%). The birth prevalence of cerebral palsy in the three states with complete case ascertainment (South Australia, Victoria, Western Australia) declined from 2.1 (95% confidence interval [CI], 1.9-2.4) cases per 1000 live births in 1995-1996 to 1.5 (95% CI, 1.3-1.7) cases per 1000 live births in 2015-2016. The birth prevalence of pre- or perinatally acquired cerebral palsy declined from 2.0 (95% CI, 1.7-2.3) to 1.4 (95% CI, 1.2-1.6) cases per 1000 live births; statistically significant declines were noted for all gestational ages except 32-36 weeks. The decline in birth prevalence of post-neonatally acquired cerebral palsy, from 0.15 (95% CI, 0.11-0.21) to 0.08 (95% CI, 0.05-0.12) cases per 1000 live births, was not statistically significant. Overall, 3.4% of children with cerebral palsy (307 children) lived in remote or very remote areas, a larger proportion than for all Australians (2.0%); the proportion of children in these areas who required wheelchairs for mobility was larger (31.3%) than that of children with cerebral palsy in major cities or regional areas (each 26.1%). CONCLUSIONS: The birth prevalence of cerebral palsy declined markedly in Australia during 1995-2016, reflecting the effects of advances in maternal and perinatal care. Our findings highlight the need to provide equitable, culturally safe access to antenatal services for women, and to health and disability services for people with cerebral palsy, across Australia.

Outpatient encounters, continuity of care, and unplanned hospital care for children and young people with cerebral palsy.

AIM: To describe the relationships between outpatient encounters, continuity of care, and unplanned hospital care in children/young people with cerebral palsy (CP). METHOD: In this population-based data-linkage cohort study we included children/young people with CP identified in the New South Wales/Australian Capital Territory CP Register (birth years 1994-2018). We measured the frequency of outpatient encounters and unplanned hospital care, defined as presentations to emergency departments and/or urgent hospital admissions (2015-2020). Continuity of outpatient care was measured using the Usual Provider of Care Index (UPCI). RESULTS: Of 3267 children/young people with CP, most (n = 2738, 83.8%, 57.6% male) had one or more outpatient encounters (123 463 total encounters, median six outpatient encounters per year during childhood). High UPCI was more common in children/young people with mild CP (Gross Motor Function Classification System levels I-III, with no epilepsy or no intellectual disability), residing in metropolitan and areas of least socioeconomic disadvantage. Low UPCI was associated with four or more emergency department presentations (adjusted odds ratio [aOR] 2.34; 95% confidence interval [CI] 1.71-3.19) and one or more urgent hospital admissions (aOR 2.02; 95% CI 1.57-2.61). INTERPRETATION: Children/young people with CP require frequent outpatient services. Improving continuity of care, particularly for those residing in regional/remote areas, may decrease need for unplanned hospital care.

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.

Temporal trends, clinical characteristics, and sociodemographic profile of post-neonatally acquired cerebral palsy in Australia, 1973-2012: A population-based observational study.

AIM: To describe post-neonatally acquired (PNN) cerebral palsy (CP) in terms of temporal trends in prevalence, clinical and sociodemographic profiles, known causes and associations between causes, and sociodemographic variables. METHOD: Numerator data, a count of children with PNN-CP confirmed at 5 years of age (n = 523), was drawn from two Australian state CP registers (birth years 1973-2012). Poisson regression was used to investigate temporal trends in the prevalence of PNN-CP by 5-year intervals, calculated per 10 000 live births. Using data from all state and territory Australian CP registers (n = 469), distributions of clinical characteristics, PNN-CP causes, and sociodemographic factors were tabulated (birth years 1995-2012). χ2 and logistic regression analyses were used to assess associations between sociodemographic profile, Australian reference data, and known causes. RESULTS: A significant temporal decline in PNN-CP in Victoria (p = 0.047) and Western Australia (p = 0.033) was observed. The most common proximal causes of PNN-CP were cerebrovascular accidents (34%, n = 158), infection (25%, n = 117), and non-accidental injuries (12%, n = 58). Children born to teenage mothers, Aboriginal and/or Torres Strait Islander mothers, or children born in remote areas were over-represented in this cohort compared with reference data (all p ≤ 0.001). Infectious causes were strongly associated with teenage motherhood (odds ratio 3.0 [95% confidence interval 1.1-8.2], p = 0.028) and remote living (odds ratio 4.5 [95% confidence interval 2.0-10.2], p < 0.001). INTERPRETATION: Although prevalence of PNN-CP has declined, the over-representation of priority populations, and the relative severity of a condition that is largely preventable, suggest the need for more specific primary preventive measures and support. WHAT THIS PAPER ADDS: Prevalence of post-neonatally acquired (PNN) cerebral palsy (CP) in Australia significantly declined between 1973 and 2012. Cerebrovascular accidents are the most common proximal cause of PNN-CP. Children born in remote areas are at greater risk of PNN-CP.

Absolute cardiovascular disease risk and lipid-lowering therapy among Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: To quantify absolute cardiovascular disease (CVD) risk in Aboriginal and Torres Strait Islander people and their use of lipid-lowering therapies. DESIGN, PARTICIPANTS: Cross-sectional analysis of nationally representative data from 2820 participants aged 18-74 years who provided biomedical data for the National Aboriginal and Torres Strait Islander Health Measures Survey component of the 2012-13 Australian Aboriginal and Torres Strait Islander Health Survey. MAIN OUTCOME MEASURES: Prior CVD and use of lipid-lowering medications were ascertained at interview. 5-year absolute risk of a primary CVD event was calculated with the Australian National Vascular Disease Prevention Alliance algorithm, with categories low (< 10%), moderate (10-15%) and high risk (> 15%). RESULTS: Among participants aged 35-74 years, 9.6% (95% CI, 7.2-12.0%) had prior CVD; 15.7% (95% CI, 13.0-18.3%) were at high, 4.9% (95% CI, 3.3-6.6%) at moderate, and 69.8% (95% CI, 66.8-72.8%) at low absolute primary CVD risk. 82.6% of those at high primary risk were identified on the basis of clinical criteria. High primary absolute risk affected 1.1% (95% CI, 0.0-2.5%) of 18-24-year-olds, 4.7% (95% CI, 2.0-7.5%) of 25-34-year-olds, and 44.2% (95% CI, 33.1-55.3%) of 65-74-year-olds. Lipid-lowering therapy was being used by 52.9% (95% CI, 38.2-67.6%) of people aged 35-74 years with prior CVD and by 42.2% (95% CI, 30.5-53.8%) of those at high primary CVD risk. CONCLUSION: Absolute CVD risk is high among Aboriginal and Torres Strait Islander people, and most of those at high risk are undertreated. Substantial proportions of people under 35 years of age are at high risk, but are not targeted by current guidelines for absolute CVD risk assessment, compromising CVD prevention in this population.

EPIC-CP pilot trial study protocol: a multicentre, randomised controlled trial investigating the feasibility and acceptability of social prescribing for Australian children with cerebral palsy.

INTRODUCTION: The social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants of health are experienced as unmet social needs, for example, unsafe housing conditions. There is emerging evidence that clinical pathways for the systematic identification and referral to services for unmet social needs can support families to address these needs. These clinical pathways have not been implemented for children with CP. The objectives are to investigate the feasibility and acceptability of two co-designed social needs clinical pathways for parents/caregivers of children with CP-social prescribing (ie, Community Linker plus resource pack) compared with resource pack only. METHODS AND ANALYSIS: This pilot randomised controlled trial will run at the three tertiary paediatric rehabilitation services in New South Wales, Australia. A total of 120 participants will be recruited, with randomisation stratified by study site. A survey tool will be used to identify families experiencing unmet social needs. Parents/caregivers who report one or more unmet social need/s and consent will be eligible. The active control group will receive a resource pack containing information on community services to support unmet social needs. The social prescribing intervention group will receive one-on-one Community Linker support, in addition to the resource pack. The survey tool, intervention, logic model, and resource pack were co-designed with patient families and their healthcare workers. Feasibility of the research design and the clinical pathways will be evaluated using the number/proportion of parents/caregivers who complete the survey tool, consent, engage with the intervention, and complete research measures. Acceptability will be evaluated using questionnaires and qualitative interviews. ETHICS AND DISSEMINATION: Human research ethics approval was granted by the Sydney Children's Hospitals Network Human Research Ethics Committee (2022/ETH01688). Participants and stakeholders will receive updates and findings via regular communication channels including meetings, presentations, and publications. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry: 12622001459718.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

INTRODUCTION: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia. This study aims to codesign a social prescribing programme to address SDH concerns of children with cerebral palsy and their families who attend one of the three tertiary paediatric rehabilitation services in New South Wales, Australia. METHODS AND ANALYSIS: This is a qualitative multi-site study conducted at the three NSW paediatric hospitals' rehabilitation departments using a codesign approach. Children aged 12-18 years with cerebral palsy, parents/caregivers of children (aged 0-18 years) with cerebral palsy, and clinicians will be involved in all stages to codesign the social prescribing programme. The study will consist of three components: (1) 'what we need', (2) 'creating the pathways' and (3) 'finalising and sign off'. This project is overseen by two advisory groups: one group of young adults with cerebral palsy and one group of parents of young people with cerebral palsy. The study will be guided by the biopsychosocial ecological framework, and analysis will follow Braun and Clark's thematic approach. ETHICS AND DISSEMINATION: The study protocol was approved by the human research ethics committee of the Sydney Children's Hospitals Network. This codesign study will inform a future pilot study of feasibility and acceptability, then if indicated, a pilot clinical trial of efficacy. We will collaborate with all project stakeholders to disseminate findings and undertake further research to build sustainable and scalable models of care. TRIAL REGISTRATION NUMBER: ACTRN12622001459718.

Reconceptualising risk: Perceptions of risk in rural and remote maternity service planning.

OBJECTIVE: to explore perceptions and examples of risk related to pregnancy and childbirth in rural and remote Australia and how these influence the planning of maternity services. DESIGN: data collection in this qualitative component of a mixed methods study included 88 semi-structured individual and group interviews (n=102), three focus groups (n=22) and one group information session (n=17). Researchers identified two categories of risk for exploration: health services risk (including clinical and corporate risks) and social risk (including cultural, emotional and financial risks). Data were aggregated and thematically analysed to identify perceptions and examples of risk related to each category. SETTING: fieldwork was conducted in four jurisdictions at nine sites in rural (n=3) and remote (n=6) Australia. PARTICIPANTS: 117 health service employees and 24 consumers. MEASUREMENTS AND FINDINGS: examples and perceptions relating to each category of risk were identified from the data. Most medical practitioners and health service managers perceived clinical risks related to rural birthing services without access to caesarean section. Consumer participants were more likely to emphasise social risks arising from a lack of local birthing services. KEY CONCLUSIONS: our analysis demonstrated that the closure of services adds social risk, which exacerbates clinical risk. Analysis also highlighted that perceptions of clinical risk are privileged over social risk in decisions about rural and remote maternity service planning. IMPLICATIONS FOR PRACTICE: a comprehensive analysis of risk that identifies how social and other forms of risk contribute to adverse clinical outcomes would benefit rural and remote people and their health services. Formal risk analyses should consider the risks associated with failure to provide birthing services in rural and remote communities as well as the risks of maintaining services.

Opportunistic screening to detect atrial fibrillation in Aboriginal adults in Australia.

INTRODUCTION: There is a 10-year gap in life expectancy between Aboriginal and non-Aboriginal Australians. The leading cause of death for Aboriginal Australians is cardiovascular disease, including myocardial infarction and stroke. Although atrial fibrillation (AF) is a known precursor to stroke there are no published studies about the prevalence of AF for Aboriginal people and limited evidence about AF in indigenous populations globally. METHODS AND ANALYSIS: This mixed methods study will recruit and train Aboriginal health workers to use an iECG device attached to a smartphone to consecutively screen 1500 Aboriginal people aged 45 years and older. The study will quantify the proportion of people who presented for follow-up assessment and/or treatment following a non-normal screening and then estimate the prevalence and age distribution of AF of the Australian Aboriginal population. The study includes semistructured interviews with the Aboriginal health workers about the effectiveness of the iECG device in their practice as well as their perceptions of the acceptability of the device for their patients. Thematic analysis will be undertaken on the qualitative data collected in the study. If the device and approach are acceptable to the Aboriginal people and widely adopted, it may help prevent the effects of untreated AF including ischaemic stroke and early deaths or impairment in Aboriginal people. ETHICS AND DISSEMINATION: This mixed methods study received ethics approval from the Aboriginal Health and Medical Research Council (1135/15) and the Australian Health Council of Western Australia (HREC706). Ethics approval is being sought in the Northern Territory. The findings of this study will be shared with Aboriginal communities, in peer reviewed publications and at conferences. There are Aboriginal investigators in each state/territory where the study is being conducted who have been actively involved in the study. They will also be involved in data analysis, dissemination and research translation. TRIAL REGISTRATION NUMBER: ACTRN12616000459426.

Australian Aboriginal kinship: a means to enhance maternal well-being.

BACKGROUND: The relocation of women from their rural communities to birth in a centralised hospital is becoming increasingly common as maternity units close in rural areas of Australia. The significance for Aboriginal women when they are denied the support of kin around the time of birth but have that support re-established postnatally is explored. METHODS: This paper gathered data from multiple sources including in-depth interviews with three Aboriginal mothers and one partner; observational field notes; and during debriefing, the knowledge and experience of an Aboriginal midwife. Thematic analysis was utilised to both explore and critique the collected data. FINDINGS AND DISCUSSION: Aboriginal women are particularly disadvantaged by maternity unit closures in rural areas of the south eastern Australian state of New South Wales (NSW). However, contrary to the expectation that this would result in postnatal mental health problems, the support the Aboriginal participants in this study received from kin may have had a mediating effect which enhanced their well-being and possibly prevented mental ill health. RECOMMENDATIONS: Recommendations relate to strategies and policies that have the potential to increase community governance and feelings of cultural safety for Aboriginal childbearing women living in rural areas. CONCLUSION: While the practice of forcing Aboriginal women to relocate around the time of birth has a negative impact on perinatal health outcomes, kinship support may be a mediating factor.

Endothelial and hematopoietic cell fate of human embryonic stem cells originates from primitive endothelium with hemangioblastic properties.

The cellular organization and relationships among precursors that initiate embryonic angiogenesis and hematopoiesis in the human have yet to be characterized. Here, we identify a subpopulation of primitive endothelial-like cells derived from human embryonic stem cells (hESCs) that express PECAM-1, Flk-1, and VE-cadherin, but not CD45 (CD45negPFV cells), and that are uniquely responsible for endothelial and hematopoietic development. Molecular profiling of CD45negPFV cells is consistent with endothelial and hematopoietic competency. Clonal isolation demonstrates that the CD45negPFV population includes bipotent cells with endothelial and hematopoietic capacity. We suggest that human hematopoiesis and endothelial maturation originate exclusively from a subset of embryonic endothelium that possesses hemangioblastic properties and offers a model system to study these lineage relationships in the human.

Human embryonic stem cells possess immune-privileged properties.

Human embryonic stem cells (hESCs) are envisioned to be a major source for cell-based therapies. Efforts to overcome rejection of hESCs include nuclear transfer and collection of hESC banks representing the broadest diversity of major histocompatability complex (MHC) polymorphorisms. Surprisingly, immune responses to hESCs have yet to be experimentally evaluated. Here, injection of hESCs into immune-competent mice was unable to induce an immune response. Undifferentiated and differentiated hESCs failed to stimulate proliferation of alloreactive primary human T cells and inhibited third-party allogeneic dendritic cell-mediated T-cell proliferation via cellular mechanisms independent of secreted factors. Upon secondary rechallenge, T cells cocultured with hESCs were still responsive to allogeneic stimulators but failed to proliferate upon re-exposure to hESCs. Our study demonstrates that hESCs possess unique immune-privileged characteristics and provides an unprecedented opportunity to further investigate the mechanisms of immune response to transplantation of hESCs that may avoid immune-mediated rejection.