Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol (original) (raw)
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Research in Developmental Disabilities, 2017
Background: Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neurodevelopmental performance of Australian Aboriginal children. An important risk factor for neurodevelopmental vulnerability is prenatal alcohol exposure (PAE), which places children at risk for Fetal Alcohol Spectrum Disorder (FASD). Aims: This study assesses neurodevelopment outcomes in a population of Australian Aboriginal children with and without PAE. Methods and procedures: Children born in 2002/2003, and living in the Fitzroy Valley, Western Australia between April 2010 and November 2011, were eligible (N = 134). Sociodemographic and antenatal data, including PAE, were collected by interview with 127/134 (95%) consenting parents/caregivers. Maternal/child medical records were reviewed. Neurodevelopment was assessed by clinicians blinded to PAE in 108/134 (81%) children and diagnoses on the FASD spectrum were assigned. Outcomes and results: Neurodevelopmental disorder was documented in 34/108 children (314.8 per 1000). Any diagnosis on the FASD spectrum was made in 21/108 (194.4 per 1000) children (95% CI = 131.0–279.0). Conclusions and implications: Neurodevelopmental impairment with or without PAE is highly prevalent among children in the Fitzroy Valley. Rates of diagnoses on the FASD spectrum are among the highest worldwide. Early intervention services are needed to support developmentally vulnerable children in remote communities.
2011
Aim: To trial the Brigance developmental screening tool as an instrument for identifying Australian Aboriginal children at risk of developmental disability and requiring diagnostic developmental assessment. Methods: We conducted a cross-sectional study of Australian Aboriginal children, aged 3-7 years, resident in three remote communities in the Northern Territory. Following informed consent, children were screened by a paediatrician using the Brigance screen. Results: There were 195 children identified as eligible, and 124 (64%) participated. All children screened, scored below the cutoff for detecting children likely to have developmental disabilities or academic delays. Furthermore, all children scored below the at-risk cutoffs that indicate high probability of disabilities in at-risk children. Conclusions: The Brigance screen identified all children in these high-risk Aboriginal communities as well behind their age peers. Language and cultural relevance, and the method of administration limit the use of this screening tool. However, we cannot ignore the uniformly poor performance on a mainstream tool used with children expected to succeed in a mainstream educational setting. Recommendations include adapting an appropriate instrument to guide developmental surveillance and monitoring in remote Australian Aboriginal communities. This study further supports the pressing need for quality early childhood services that address the significant risk confronting Aboriginal children and prepare them in a way that ensures school and future success.
BMJ open, 2012
Anecdotal reports suggest that high-risk drinking in pregnancy is common in some remote Australian communities. Alcohol is teratogenic and may cause a range of lifelong conditions termed 'fetal alcohol spectrum disorders' (FASD). Australia has few diagnostic services for FASD, and prevalence of these neurodevelopmental disorders remains unknown. In 2009, Aboriginal leaders in the remote Fitzroy Valley in North Western Australia identified FASD as a community priority and initiated the Lililwani Project in partnership with leading research organisations. This project will establish the prevalence of FASD and other health and developmental problems in school-aged children residing in the Fitzroy Valley, providing data to inform FASD prevention and management. This is a population-based active case ascertainment study of all children born in 2002 and 2003 and residing in the Fitzroy Valley. Participants will be identified from the Fitzroy Valley Population Project and Communica...
Disparities in Canadian Indigenous Health Research on Neurodevelopmental Disorders
Objective: To map the landscape of research on autism (ASD), cerebral palsy (CP), and fetal alcohol spectrum disorder (FASD) in Canadian Aboriginal children. Method: The authors used a detailed search strategy to identify and access publications on ASD, CP, and FASD involving Canadian Aboriginal children, families, and communities from online databases. They analyzed these materials for the type of research, stated objectives, methodologies, and the level of engagement of Aboriginal Peoples. Results: The authors found a total of 52 reports published since 1981 relevant to Aboriginal children. Of these, 51 focused exclusively on FASD. They also found a near-complete failure to acknowledge community involvement in research decisions or dissemination of results in any of the publications. Conclusions: The focus on FASD in Aboriginal children and the absence of research on the other 2 major childhood disorders are at odds with rates of these disorders across Canadian children. The authors argue that this trend violates fundamental principles ensuring equitable representation of all children regardless of background in research and access to benefits of research in health care and perpetuates stigma in an already marginalized population.
Comparing risks of cerebral palsy in births between Australian Indigenous and non-Indigenous mothers
Developmental Medicine & Child Neurology, 2016
To compare proportions of live births subsequently described as having cerebral palsy (CP), the distributions of associated impairments, and the causes of postneonatal CP between Aboriginal and Torres Strait Islander (Indigenous) and non-Indigenous populations in Australia. METHOD Data from statutory birth records and CP registers for the 1996 to 2005 birth cohort in Queensland, Western Australia, and the Northern Territory were stratified by Indigenous status and whether the CP was acquired pre/perinatally or postneonatally. Relative risks associated with Indigenous status were estimated and the distributions of causes of postneonatal CP compared. RESULTS Indigenous births had a relative risk of 4.9 (95% confidence interval [CI] 3.0-7.9) for postneonatal CP but only of 1.42 (95% CI 1.2-1.7) for pre/perinatal CP. Almost half of postneonatal CP in Indigenous infants resulted from infection, whereas for non-Indigenous infants the most frequent cause was cerebrovascular accident. The impairments of Indigenous CP and of postneonatally acquired CP tended to be more numerous and more severe. INTERPRETATION Indigenous children are at significantly greater risk of CP, particularly postneonatal CP. The predominant cause of postneonatal CP in non-Indigenous children has shifted to cerebrovascular accident over time; however, infections followed by head injury are still the most frequent causes in Indigenous infants.
BMC Health Services Research, 2019
Background: Fetal alcohol spectrum disorder (FASD) is a highly prevalent neurodevelopmental disorder associated with prenatal alcohol exposure. Early identification can improve functioning for individuals and reduce costs to society. Gold standard methods of diagnosing FASD rely on specialists to deliver intensive, multidisciplinary assessments. While comprehensive, prevalence rates highlight that this assessment model cannot meet demand, nor is it feasible in remote areas where specialist services are lacking. This project aims to expand the capabilities of remote practitioners in north Queensland, Australia, where 23-94% of the community identify as First Nations people. Integrating cultural protocols with the implementation science theories of Knowledge-To-Action, Experience-Based Co-Design, and RE-AIM, remote practitioners with varying levels of experience will be trained in a co-designed, culturally appropriate, tiered neurodevelopmental assessment process that considers FASD as a potential outcome. This innovative assessment process can be shared between primary and tertiary health care settings, improving access to services for children and families. This project aims to demonstrate that neurodevelopmental assessments can be integrated seamlessly with established community practices and sustained through evidence-based workforce development strategies. Methods: The Yapatjarrathati project (named by the local First Nations community and meaning 'to get well') is a mixedmethod implementation trial of a tiered assessment process for identifying FASD within a remote Australian community. In collaboration with the community, we co-designed: (a) a culturally sensitive, tiered, neurodevelopmental assessment process for identifying FASD, and (b) training materials that up-skill remote practitioners with varying levels of expertise. Qualitative interviews for primary, secondary and end users will be undertaken to evaluate the implementation strategies. RE-AIM will be used to evaluate the reach, effectiveness, adoption, implementation and maintenance of the assessment and training process.
Paediatrics & Child Health, 2017
Background: Although fetal alcohol spectrum disorder (FASD) can have a disproportionate impact in some Indigenous communities, there is a paucity of literature on its epidemiology. Objective: To characterize the epidemiology of Indigenous individuals under the age of 18 years who were diagnosed with FASD at Anishnawbe Health Toronto over a 10-year period. Methods: Children who were assessed at Anishnawbe Health Toronto from 2002 to 2012 and met the 2005 criteria for FASD were included. The multidisciplinary team assessed neurodevelopmental abnormalities, FASD facial features and growth parameters and enquired about maternal alcohol consumption, current custody and involvement with the criminal justice system. Results: Forty-nine children were diagnosed with FASD. None of these had full fetal alcohol syndrome (FAS); 12 were diagnosed as partial FAS and 37 with alcohol-related neurodevelopmental disorder (ARND). Thirty-five were male and the median age at diagnosis was 9 years. Nineteen were wards of children's services, and 8 were living with adoptive parents. All children had abnormalities in psychometric testing. Other issues included: behavioural issues (80%); learning disabilities (63%); attention deficit hyperactivity disorder (43%); developmental delay (14%); involvement with the criminal justice system (12%) and alcohol abuse (10%). The morbidity and impairment for ARND was higher on almost every measurement compared with partial FAS. Conclusions: FASD is a preventable cause of lifelong significant morbidity to Indigenous children with a high proportion of children needing foster-care services and involvement with the criminal justice system at an early age. Although ARND is difficult to diagnose, it can result in significant morbidity. Additional resources for culturally sensitive primary prevention and early diagnosis of FASD for Indigenous families are required.
2013
Fetal alcohol spectrum disorder (FASD) is an umbrella term that encompasses a spectrum of lifelong disabilities resulting from gestational (prenatal) alcohol exposure. At one end is the full fetal alcohol syndrome (FAS), involving craniofacial dysmorphology (particularly midfacial anomalies), growth retardation, and deficits in brain function. Less visible, but equally disabling, can be alcoholrelated neurodevelopmental disorder (ARND), formerly referred to as fetal alcohol effects; children
Soft neurological signs and prenatal alcohol exposure: a population-based study in remote Australia
Developmental medicine and child neurology, 2016
To identify soft neurological signs (SNS) in a population-based study of children living in remote Aboriginal communities in the Fitzroy Valley, Western Australia, born between 2002 and 2003 and explore the relationship between SNS, prenatal alcohol exposure (PAE), and fetal alcohol spectrum disorders (FASD). The presence of SNS was assessed using the Quick Neurological Screening Test, 2nd edition (QNST-2), which has a total maximum score of 140. Higher scores indicated more SNS. 'Severe discrepancy' was defined as scores less than or equal to the fifth centile while 'moderate discrepancy' represented scores from the sixth to the 24th centile. Children were assigned FASD diagnoses using modified Canadian FASD diagnostic guidelines. A total of 108 of 134 (80.6%) eligible children (mean age 8y 9mo, SD=6mo, 53% male) were assessed. The median QNST-2 Total Score for all participants was within the normal category (19.0, range 4-66). However, the median QNST-2 Total Score...
First Peoples Child Family Review, 2013
Children 's Survey (2006) was used in the current study to assess the prevalence of FASD among Aboriginal children living off reserve across Canada. Characteristics of Aboriginal children with or without a diagnosis of FASD and living in Western Canada were also assessed. Rates of FASD were higher in Alberta and Manitoba than other provinces and territories. For these children who were diagnosed with FASD half received treatment for FASD and treatment rates did not vary across provinces. In Western Canada, FASD was more common among children identified as First Nations, and among older children. Rates of FASD were also higher for Aboriginal children who lived in low income situations, who had experienced food insecurity, or who lived with foster parents. Therefore, Aboriginal children with FASD likely experience other life challenges and these factors should be considered when treating these young children.