Evaluation of the Fetal Alcohol Spectrum Disorder Hub Australia website.

INTRODUCTION: To evaluate use and utility of the Fetal Alcohol Spectrum Disorder (FASD) Hub Australia website. METHODS: Online REDCap user survey incorporating the Website Evaluation Questionnaire, open ended questions, Google metrics data and an accessibility audit. RESULTS: Seventy-six participants: researchers (32%), health professionals (29%) and policymakers/advocates (16%) completed the survey. Most were from Australia (95%) and were likely or very likely to recommend the FASD Hub to colleagues (92%), friends (74%) and patients (72%). The mean Website Evaluation Questionnaire score was at least 3.45/5 for all dimensions (ease of use, hyperlinks, structure, relevance, comprehension, completeness, layout, search option); range 3.45 (search option) to 4.04 (relevance). Participants found the content trustworthy (92%) but wanted more information for, and to support, Aboriginal and Torres Strait Islander peoples, and improved search capacity. Google metrics identified 25,534 unique users over 6 months (82% new users); 83% aged 18-44 years, 72% female and 35% international. CONCLUSIONS: Users found the FASD Hub accessible, authoritative and useful and suggested improvements.

Ovulation induction and subfertile untreated conception groups offer improved options for interpreting risks associated with ART.

PURPOSE: To identify and characterise appropriate comparison groups for population studies of health outcomes in ART-conceived births: ovulation induction (OI), subfertile untreated and fertile natural conceptions. Our secondary objective was to examine whether known risks of pregnancy complications and adverse birth outcomes in ART births are elevated in comparison with subfertile (untreated and OI) conception groups. METHODS: We linked State and Commonwealth datasets to identify all live and stillbirths (≥ 20 weeks) in Western Australia from 2003 to 2014 by method of conception. Demographic characteristics, maternal pre-existing conditions, adverse obstetric history and pregnancy complications were compared across conception groups. Generalised estimating equations were used to estimate adjusted risk ratios (aRRs) and 95% confidence intervals (CI) for pregnancy complications and birth outcomes in singletons. RESULTS: We identified 9456 ART, 3870 OI, 11,484 subfertile untreated and 303,921 fertile naturally conceived deliveries. OI and subfertile untreated groups more closely resembled the ART group than the fertile group; however, some differences remained across parity, maternal age, pre-existing conditions and obstetric history. In multivariate analyses, ART singletons had greater risks of placental problems (e.g. placenta praevia aRR 2.42 (95% CI 1.82-3.20)) and adverse birth outcomes (e.g. preterm birth aRR 1.38 (95% CI 1.25-1.52)) than the subfertile untreated group, while OI singletons were more similar to the subfertile group with higher risk of preeclampsia and gestational diabetes. CONCLUSION: OI and subfertile untreated conception groups offer improved options for interpreting health outcomes in ART births. Pregnancy complications (particularly placental disorders) and adverse outcomes at delivery are more common following ART.

Fetal alcohol spectrum disorder and Aboriginal and Torres Strait Islander men: A discussion to be had.

Fetal alcohol spectrum disorder (FASD) is a lifelong disability of varying severity that occurs among individuals prenatally exposed to alcohol. Among Aboriginal and Torres Strait Islander (Indigenous) Australians, the effects of colonisation and ongoing racism could increase the risk of alcohol consumption during pregnancy. Much of the research and the effort towards prevention of and caring for people with FASD in Indigenous communities has been targeted towards women and children. More support and effort towards prevention of FASD is needed across the whole Indigenous community. In this paper, we discuss several areas for increased involvement by Indigenous men in future FASD research, prevention, care and support.

Trends in prenatal diagnosis of congenital anomalies in Western Australia between 1980 and 2020: A population-based study.

BACKGROUND: Advances in screening and diagnostics have changed the way in which we identify and diagnose congenital anomalies. OBJECTIVE: To examine changes in rates of prenatal diagnosis of congenital anomalies over time and by demographic characteristics. METHODS: We undertook a population-based retrospective cohort study of all children born in Western Australia between 1980 and 2020 and diagnosed with a congenital anomaly. Age at diagnosis (prenatal, neonatal, infancy, early childhood or childhood) prevalence (all-type and type-specific), and prevalence ratios (PR) were calculated. We fit joinpoint regression models to describe the average annual percentage change (APC) in prenatal diagnosis over time, and log-binomial regression models to estimate the association between prenatal diagnosis and demographic characteristics. RESULTS: Prenatal diagnosis prevalence between the first (1980-1989: 28.3 per 10,000 births) and last (2005-2014: 156.1 per 10,000 births) decades of the study increased 5.5-fold (95% confidence interval [CI] 5.0, 5.9). Substantial increases were observed for cardiovascular (PR 10.7, 95% CI 8.0, 14.6), urogenital (PR 10.5, 95% CI: 8.7, 12.6) and chromosomal anomalies (PR 7.0, 95% CI 5.9, 8.3). Prenatal diagnosis was positively associated with the birth year (adjusted risk ratio [RR] 1.04, 95% CI 1.03, 1.04), advanced maternal age (RR 1.14, 95% CI 1.11, 1.18), multiple anomalies (RR 2.86, 95% CI 2.77, 2.96) and major anomalies (RR 3.75, 95% CI 3.36, 4.19), and inversely associated with remoteness (RR 0.89, 95% CI: 0.83, 0.95) and Aboriginality (RR 0.90, 95% CI 0.83, 0.97). CONCLUSIONS: Increases in prenatal diagnosis of congenital anomalies were observed in Western Australia from 1980 to 2020, reflecting advances in screening. Prenatal diagnosis was less common in remote regions and in Aboriginal children, strengthening calls for increased provision of antenatal care services for these populations.

Intellectual disabilities and autism among children with congenital heart defects, Western Australia, 1983-2010.

BACKGROUND: Children with congenital heart defects (CHDs) are at higher risk of developing an intellectual disability. However, severity of intellectual disabilities among this group of children are largely unknown. Our objective was to determine the risk of intellectual disability (ID), ID severity, and autism among children with CHDs. METHODS: We conducted a retrospective cohort study of singleton live births in Western Australia (n = 20,592) between 1983 and 2010. Children with CHDs were identified from the Western Australian Register for Developmental Anomalies (n = 6563) and infants without CHDs were randomly selected from state birth records (n = 14,029). Children diagnosed with ID before 18 years were identified by linkage to statewide Intellectual Disability Exploring Answers database. Odds ratios (OR) and 95% confidence intervals (CI) were calculated from logistic regression models for all CHDs combined and by CHD severity adjusting for potential confounders. RESULTS: Of 20,592 children, 466 (7.1%) with CHDs and 187 (1.3%) without CHDs had an ID. Compared to children without CHDs, children with any CHD had 5.26 times (95% CI 4.42, 6.26) the odds of having an ID and 4.76 times (95% CI 3.98, 5.70) the odds of having mild/moderate ID. Children with any CHD had 1.76 times the odds of having autism (95% CI 1.07, 2.88), and 3.27 times the odds of having an unknown cause of ID (95% CI 2.65, 4.05) compared to children without CHD. The risk of having autism (aOR 3.23, 95% CI 1.11, 9.38), and unknown cause of ID (aOR 3.45, 95% CI 2.09, 5.70) was greatest for children with mild CHD. CONCLUSIONS: Children with CHDs were more likely to have an ID or autism. Future research should elucidate underlying etiology of ID in children with CHDs.

Mandatory fortification with folic acid for the prevention of neural tube defects: a case study of Australia and New Zealand.

PURPOSE: To present a case study of the considerations of mandatory fortification with folic acid in Australia and New Zealand. METHODS: Review of published reports and consumer advocacy views. RESULTS: Australia and New Zealand jointly approved mandatory fortification of flour with folic acid to prevent neural tube defects in 2007. Fortification was fully implemented in Australia in 2009 and has resulted in reduction in NTD. At the last minute, industry lobbying led to the New Zealand government not proceeding with fortification. With continued consumer advocacy, mounting scientific evidence, and a change of government, approval was given in 2021 for mandatory fortification of flour with folic acid. CONCLUSION: In large part as a response to consumer pressure, New Zealand has now joined with Australia (and around 70 other countries) in fortifying flour with folic acid for the prevention of NTD.

Eye Abnormalities in Children with Fetal Alcohol Spectrum Disorders: A Systematic Review.

PURPOSE: Although eye abnormalities are reported in fetal alcohol spectrum disorders (FASD), no systematic review based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines has been undertaken. Our aim was to document the range and prevalence of eye abnormalities reported in children with prenatal alcohol exposure (PAE) and/or FASD. METHODS: Searches of electronic databases and manual searches. Eligible articles were observational studies in children with PAE and/or FASD; peer reviewed journal articles in the English language; and studies reporting quantitative or frequency data on functional/structural eye abnormalities. Pooled prevalence, odds ratio, and mean differences were calculated. RESULTS: Of the 1,068 retrieved articles 36 were eligible, including articles on children with diagnosed fetal alcohol syndrome/FASD (N = 31); PAE (N = 3); and FASD or PAE without FASD (N = 2). Structural and functional eye abnormalities were identified, the most prevalent being short palpebral fissure length (66.1%), visual impairment (55.5%), epicanthus (53.5%), subnormal stereoacuity (53.0%), abnormal retinal tortuosity (50.5%), impaired fixation ability (33.3%), telecanthus (31.7%), optic nerve hypoplasia (30.2%), and small optic discs (27.0%). Compared to non-exposed controls, strabismus, subnormal vision, ptosis, short palpebral fissure length, microphthalmos, smaller optic disc area, and retinal vessel tortuosity were more prevalent in children with FASD. CONCLUSIONS: Examination of eyes and vision should be considered in children with PAE and suspected or diagnosed FASD to enable early identification and optimal management. This first comprehensive, systematic literature review demonstrates the variety and frequency of eye abnormalities reported in PAE/FASD.

Reframe the Behaviour: Evaluation of a training intervention to increase capacity in managing detained youth with fetal alcohol spectrum disorder and neurodevelopmental impairments.

The first study to investigate the prevalence of fetal alcohol spectrum disorder (FASD) within an Australian juvenile detention centre has identified the highest known prevalence of FASD among a justice-involved population worldwide. However, there has been limited investigation into the capacity of the custodial workforce to identify and manage young people in Australian detention centres with FASD or other neurodevelopmental impairment (NDI), and no published interventions aiming to develop environments appropriate for those with FASD in justice settings. Using the Template for Intervention Description and Replication checklist, this study describes the conception, implementation and evaluation of a training intervention aiming to upskill the custodial workforce in the management of youth with FASD and NDI; 117 staff participated in the intervention, and 109 completed pre- and post-intervention surveys. Improvements were seen across almost all knowledge and attitude items, and the intervention was considered highly necessary, appropriate and valuable by the workforce.

It takes a village: Influencing policy and practice to prevent alcohol use in pregnancy and promote better outcomes for individuals living with Fetal Alcohol Spectrum Disorder.

Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by exposure to alcohol in utero. It has pervasive, lifelong impacts and is recognised as a major public health concern in many countries where alcohol is used. The FASD Research Australia Centre of Research Excellence (CRE) was funded by the National Health and Medical Research Council to generate and translate evidence to address prevention, diagnosis, and management of FASD in Australia. The current paper describes the approach to policy and practice impact taken by our CRE, including our stakeholder engagement processes and the key principles that underlie our approach. We provide examples of policy and practice influence in FASD prevention, diagnosis and management that have been achieved over the past five years and discuss challenges that are routinely faced in the translation of our work.

'That thing in his head': Aboriginal and non-Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses.

Little is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers' experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children's diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers' engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person's capacity and status.

Maternal Alcohol-Use Disorder and Child Outcomes.

OBJECTIVES: Investigate the relationship between maternal alcohol-use disorder and multiple biological and social child outcomes, including birth outcomes, child protection, justice contact, and academic outcomes for both Indigenous and non-Indigenous children. METHODS: Women with a birth recorded on the Western Australian Midwives Notification System (1983-2007) and their offspring were in scope. The exposed cohort were mothers with an alcohol-related diagnosis (International Classification of Diseases, Ninth Revision and International Classification of Diseases, 10th Revision) recorded in an administrative data set and their offspring (non-Indigenous: n = 13 969; Indigenous: n = 9635). The exposed cohort was frequency matched with mothers with no record of an alcohol-related diagnosis and their offspring (comparison cohort; non-Indigenous: n = 40 302; Indigenous: n = 20 533). RESULTS: Over half of exposed non-Indigenous children (55%) and 84% of exposed Indigenous children experienced ≥1 negative outcome. The likelihood of any negative outcome was significantly higher for the exposed than the comparison cohort (non-Indigenous: odds ratio [OR] = 2.67 [95% confidence interval (CI) = 2.56-2.78]; Indigenous: OR = 2.67 [95% CI = 2.50-2.85]). The odds were greatest for children whose mothers received a diagnosis during pregnancy (non-Indigenous: OR = 4.65 [95% CI = 3.87-5.59]; Indigenous: OR = 5.18 [95% CI = 4.10-6.55]); however, numbers were small. CONCLUSIONS: The effects of maternal alcohol-use disorder are experienced by the majority of exposed children rather than a vulnerable subgroup of this population. These findings highlight the need for universal prevention strategies to reduce harmful alcohol use and targeted interventions to support at-risk women and children.

Literacy and Numeracy Underachievement in Boys and Girls With ADHD.

Objective: The aim was to determine literacy and numeracy outcomes, among children with and without ADHD by gestational age and gender. Method: De-identified linked population data from the Western Australian Monitoring of Drugs of Dependence System and Western Australian Literacy and Numeracy Assessment databases, and the Midwives Notification System used information on 6,819 children with ADHD compared with 14,451 non-ADHD children. Results: A total of 23% of boys and 28% of girls with ADHD had numeracy scores below the benchmark in School Year 3, compared with 11% of children without ADHD. These differences were also evident for reading, writing, and spelling through primary school. Children with ADHD and reduced gestational age were at a greater risk of not meeting numeracy and reading benchmarks, compared with children born at term. Conclusion: Children with ADHD are disadvantaged from an early age in key areas of learning, and this risk increased with reduction in gestational age at birth.

Literacy and Numeracy Underachievement in Boys and Girls With ADHD.

Objective: To determine literacy and numeracy outcomes, among children with and without ADHD by gestational age and gender. Method: De-identified linked population data from the Western Australian Monitoring of Drug Dependence Systems, Western Australian Literacy and Numeracy Assessment database, and the Midwives Notification System used information on 6,819 children with ADHD compared with 14,451 non-ADHD children. Results: Twenty-three percent of boys and 28% of girls with ADHD had numeracy scores below the benchmark in School Year 3, compared with 11% of children without ADHD. These differences were also evident in reading, writing, and spelling through primary school. Children with ADHD and reduced gestational age were at a greater risk of not meeting numeracy and reading benchmarks, compared with children born at term. Conclusion: Children with ADHD are disadvantaged from an early age in key areas of learning, and this risk increased with reduction in gestational age at birth.

Disability "In-Justice": The Benefits and Challenges of "Yarning" With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center.

Undertaking research with young people presents an array of methodological challenges. We report the findings from a qualitative study that took place alongside a fetal alcohol spectrum disorder (FASD) prevalence study among detainees in Australia. Of 38 participants, 27 were Aboriginal youth. Interviews were conducted using "social yarning" and "research topic yarning," an Indigenous research method which allows for data collection in an exploratory, culturally safe way. A complex interplay emerged between social yarning and research topic yarning which provided a space to explore responsively with participants their experiences of FASD assessments. Flexibility, including language adaptation and visual descriptions about assessments, was utilized to assist participants recall and retell their experiences. There were, however, challenges in gathering data on the assessment experiences of some participants. We describe how employing a "yarning" method for collecting data could benefit children and young people undergoing neurodevelopmental assessments in the future.

Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions.

BACKGROUND: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. METHODS: Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. RESULTS: We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health professionals. Funding and administrative arrangements were complex and services poorly coordinated and sometimes duplicated. The large geographic area, distances, extreme climate and lack of public and private transport challenge service delivery. The need to attend to acute illness acts to deprioritise crucial primary and preventative health care and capacity for dealing with chronic, complex disorders. Some services lack cultural safety and there is a critical shortage of Aboriginal Health Workers (AHW). CONCLUSIONS: Services are fragmented and variable and would benefit from a coordinated approach between government, community-controlled agencies, health and education sectors. A unifying model of care with emphasis on capacity-building in Aboriginal community members and training and support for AHW and other health professionals is required but must be developed in consultation with communities. Innovative diagnostic and care models are needed to address these challenges, which are applicable to many remote Australian settings outside the Fitzroy Valley, as well as other countries globally. Our results will inform future health service planning and strategies to attract and retain health professionals to work in these demanding settings. A prospective audit of child health services is now needed to inform improved planning of child health services with a focus on identifying service gaps and training needs and better coordinating existing services to improve efficiency and potentially also efficacy.

Hypospadias Prevalence and Trends in International Birth Defect Surveillance Systems, 1980-2010.

BACKGROUND: Hypospadias is a common male birth defect that has shown widespread variation in reported prevalence estimates. Many countries have reported increasing trends over recent decades. OBJECTIVE: To analyze the prevalence and trends of hypospadias for 27 international programs over a 31-yr period. DESIGN, SETTING, AND PARTICIPANTS: The study population included live births, stillbirths, and elective terminations of pregnancy diagnosed with hypospadias during 1980-2010 from 27 surveillance programs around the world. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We used joinpoint regression to analyze changes over time in international total prevalence of hypospadias across programs, prevalence for each specific program, and prevalence across different degrees of severity of hypospadias. RESULTS AND LIMITATIONS: The international total prevalence of hypospadias for all years was 20.9 (95% confidence interval: 19.2-22.6) per 10000 births. The prevalence for each program ranged from 2.1 to 39.1 per 10000 births. The international total prevalence increased 1.6 times during the study period, by 0.25 cases per 10000 births per year (p<0.05). When analyzed separately, there were increasing trends for first-, second-, and third-degree hypospadias during the early 1990s to mid-2000s. The majority of programs (61.9%) had a significantly increasing trend during many of the years evaluated. Limitations include known differences in data collection methods across programs. CONCLUSIONS: Although there have been changes in clinical practice and registry ascertainment over time in some countries, the consistency in the observed increasing trends across many programs and by degrees of severity suggests that the total prevalence of hypospadias may be increasing in many countries. This observation is contrary to some previous reports that suggested that the total prevalence of hypospadias was no longer increasing in recent decades. PATIENT SUMMARY: We report on the prevalence and trends of hypospadias among 27 birth defect surveillance systems, which indicate that the prevalence of hypospadias continues to increase internationally.

Folate Status and Neural Tube Defects in Aboriginal Australians: the Success of Mandatory Fortification in Reducing a Health Disparity.

Historically, neural tube defects (NTD) in Australia affected around 1 in every 1000 births; 42% higher for Aboriginal births. Following firm evidence of the protective effect of periconceptional folate, health promotion activities encouraged increased folate intake through diet and supplements and limited voluntary food fortification. A 30% reduction in NTD was observed in non-Aboriginal but not Aboriginal infants, widening the disparity between Aboriginal and non-Aboriginal rates. Mandatory flour fortification with folic acid in 2009, led to further reductions in overall NTD, and greater reduction among Aboriginal infants, such that rates in Aboriginal and non-Aboriginal infants were similar by 2010-2014. Elimination of this disparity will make a small but important contribution to the Australian government's Closing the Gap initiative to reduce disadvantage among Aboriginal people. Long-term, complete, high-quality surveillance data on NTD have been of great value in monitoring trends in and evaluation of public health interventions for NTD in Australia.

Challenges in Accurately Assessing Prenatal Alcohol Exposure in a Study of Fetal Alcohol Spectrum Disorder in a Youth Detention Center.

BACKGROUND: Prenatal alcohol exposure (PAE) can result in permanent disability, including physical, neurodevelopmental, and cognitive impairments, known as fetal alcohol spectrum disorder (FASD). Individuals with FASD are more likely to engage with the law, including being placed in detention, than individuals without FASD. Young people who were sentenced to detention participated in a FASD prevalence study in Western Australia. The diagnosis of FASD requires a multidisciplinary assessment and confirmation of maternal alcohol consumption during pregnancy. Obtaining accurate assessment of PAE for young people participating in the study was challenging. METHODS: An interview with the birth mother or other responsible adult for young people sentenced to detention in Western Australia was conducted as part of the FASD assessment. The Alcohol Use Disorders Identification Test consumption subset (AUDIT-C), other relevant questions, and documentary evidence were used to assess PAE. PAE was categorized according to the Australian Guide to the Diagnosis of FASD: no PAE reported, confirmed or confirmed high-risk, or unknown. RESULTS: Among the 101 participants, information on PAE was unable to be obtained for 13 (13%) young people. Of the remaining 88 participants with information of PAE, 41 reported no PAE and 47 had confirmed PAE. CONCLUSIONS: Accurately assessing prenatal alcohol consumption is challenging in any setting, but it is exceptionally challenging when assessed 13 to 17 years retrospectively as part of a FASD assessment for a young person sentenced to detention. Recording and recoding detailed qualitative responses was required to provide an accurate assessment of PAE using the AUDIT-C. Standardized recording of PAE in antenatal and birth records would facilitate later assessments for FASD and provide opportunities for advice and support for women who continue to drink during pregnancy.

Language diversity, language disorder, and fetal alcohol spectrum disorder among youth sentenced to detention in Western Australia.

BACKGROUND: While studies confirm high prevalence of language disorder among justice-involved young people, little is known about the impact of Fetal Alcohol Spectrum Disorder (FASD) on language among this population. It is also not clear how language skills vary according to language diversity in Australian youth justice settings, where a disproportionate number of justice-involved youth are Aboriginal and may not speak Standard Australian English (SAE) as their first language. Language skills are important to understand, as language disorder and language difference can lead to a mismatch between the communication skills of a young person and the communication skills of the justice workforce with whom they are communicating. In the highly verbal environments that are common to justice systems, language disorder and language difference may result in a young person misunderstanding legal information and expectations placed on them and not being adequately understood by the justice workforce. METHODS: This study examined the language skills of 98 young people sentenced to detention in Western Australia (WA), who participated in a cross-sectional study examining the prevalence of FASD. Language skills assessed using standardised and non-standardised tasks were analysed by the three major language groups identified: speakers of SAE, Aboriginal English and English as an additional language. RESULTS: We identified rich diversity of languages, and multilingualism was common. Most young people for whom English was not their first language demonstrated difficulties in SAE competence. Further, nearly one in two young people were identified with language disorder - over half of whom had language disorder associated with FASD. CONCLUSIONS: This study has documented language diversity and the prevalence of language disorder associated with FASD among a representative sample of youth sentenced to detention in WA. Results underscore the need for the justice workforce to consider language difference when working with justice-involved youth, as well as language disorder and FASD. The findings also demonstrate the need for speech pathology to be embedded as core service in youth justice systems, working in collaboration with local cultural and language advisors and accredited interpreters. This can better enable appropriate identification of and response to communication and associated rehabilitation needs of young people navigating youth justice systems.

Congenital diaphragmatic hernia: Impact of contemporary management strategies on perinatal outcomes.

OBJECTIVE: This study aims to review temporal changes in perinatal management and 1-year survival outcomes of cases of congenital diaphragmatic hernia (CDH) from 1996 to 2015 in Western Australia (WA). METHOD: This research is a retrospective study of all cases of CDH in WA from 1996 to 2015 identified from five independent databases within the WA health network. Detailed information pertaining to pregnancy and survival outcomes were obtained from review of maternal and infant medical records. RESULTS: There were 215 cases of CDH with 164 diagnosed prenatally. Between 1996 and 2010, a decline in live birth rates for CDH-affected pregnancies was observed, reaching a nadir of 5.3 per 10 000 births before increasing to a peak of 9.73 per 10 000 births in 2011-2015. A corresponding decline was seen in the number of pregnancies terminated in the same period from 8.3 to 4.6 per 10 000 births (P = 0.14) and an increase in survival of live births from 38.9% to 81.3% (P = 0.01). CONCLUSION: The improved overall survival rate in infants with CDH over the last 20 years may have resulted in an increased tendency for women to continue their pregnancy with a concomitant decline in termination rates. Information from this study will help in the counselling of women following prenatal detection of CDH.