Prevalence and profile of Neurodevelopment and Fetal Alcohol Spectrum Disorder (FASD) amongst Australian Aboriginal children living in remote communities (original) (raw)
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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...
BMJ Open, 2022
IntroductionThe Lililwan Project was the first Australian population-based prevalence study of fetal alcohol spectrum disorder (FASD) using active case ascertainment. Conducted in 2010–2011, the study included 95% of all eligible children aged 7–9 years living in the very remote Aboriginal communities of the Fitzroy Valley, Western Australia. Women from Marninwarntikura Women’s Resource Centre, a local Aboriginal-led organisation, are concerned that some participants from the study are struggling in adolescence so partnered with researchers from the University of Sydney to follow up the Lililwan cohort in 2020–2022 at age 17–19 years.The overarching aim of the Bigiswun Kid Project is to identify adolescents’ needs and build knowledge to inform services to improve the health and well-being of adolescents in remote Aboriginal communities. The specific aims are to: (1) provide a voice to adolescents and their families to understand the health and well-being status of the Lililwan cohor...
Addressing Fetal Alcohol Spectrum Disorder in Aboriginal Communities
2014
This chapter begins with a description of Fetal Alcohol Spectrum Disorder (FASD) and examples of reported prevalence of FASD in the international context. It then draws on international and Australian studies to describe the burden of FASD, including studies relevant to the Aboriginal population. The section on the Australian context provides a description of some of the action that has been taken in Australia to address FASD. The section on the Life Cycle model includes stories of Aboriginal people, from a major city and rural and remote communities in northern and southeast Queensland, on their experiences and perceptions of alcohol. These stories, collected by Hayes in 1997 and 1998, led to the development of the Life Cycle model. This model can be adopted to address the complexities of FASD in the Aboriginal population. The final section describes initiatives driven by local Aboriginal communities, and accepted as best practice, for addressing FASD in their communities. The chap...
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
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.
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.
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...
Journal of Paediatrics and Child Health, 2015
Aim: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. Methods: Population-based prevalence study using active case ascertainment in children born in) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. Results: In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the first trimester and 50% throughout pregnancy. Ten of 13 mothers had Alcohol Use Disorders Identification Test scores and all drank at a high-risk level. Of children with FAS/pFAS, 69% had microcephaly, 85% had weight deficiency and all had facial dysmorphology and central nervous system abnormality/ impairment in three to eight domains. Conclusions: The population prevalence of FAS/pFAS in remote Aboriginal communities of the Fitzroy Valley is the highest reported in Australia and similar to that reported in high-risk populations internationally. Results are likely to be generalisable to other age groups in the Fitzroy Valley and other remote Australian communities with high-risk alcohol use during pregnancy. Prevention of FAS/pFAS is an urgent public health challenge.
BMJ Open, 2022
IntroductionNeurodevelopmental disorders (NDD), including cerebral palsy (CP), autism spectrum disorder (ASD) and foetal alcohol spectrum disorder (FASD), are characterised by impaired development of the early central nervous system, impacting cognitive and/or physical function. Early detection of NDD enables infants to be fast-tracked to early intervention services, optimising outcomes. Aboriginal and Torres Strait Islander infants may experience early life factors increasing their risk of neurodevelopmental vulnerability, which persist into later childhood, further compounding the health inequities experienced by First Nations peoples in Australia. The LEAP-CP prospective cohort study will investigate the efficacy of early screening programmes, implemented in Queensland, Australia to earlier identify Aboriginal and Torres Strait Islander infants who are ‘at risk’ of adverse neurodevelopmental outcomes (NDO) or NDD. Diagnostic accuracy and feasibility of early detection tools for i...