Fetal alcohol spectrum disorders screening tools: A systematic review.

BACKGROUND: Screening facilitates the early identification of fetal alcohol spectrum disorder (FASD) and prevalence estimation of FASD for timely prevention, diagnostic, and management planning. However, little is known about FASD screening tools. AIMS: The aims of this systematic review are to identify FASD screening tools and examine their performance characteristics. METHODS: Four electronic databases were searched for eligible studies that examined individuals with FASD or prenatal alcohol exposure and reported the sensitivity and specificity of FASD screening tools. The quality of the studies was assessed using the Quality Assessment of Diagnostic Studies-2 tool. RESULTS: Sixteen studies were identified, comprising five fetal alcohol syndrome (FAS) and seven FASD screening tools. They varied in screening approach and performance characteristics and were linked to four different diagnostic criteria. FAS screening tools performed well in the identification of individuals at risk of FAS while the performance of FASD screening tools varied in the identification of individuals at risk of FASD. CONCLUSION AND IMPLICATIONS: Results highlight the vast differences in the screening approaches performance characteristics, and diagnostic criteria linked to FASD screening tools. More research is needed to identify biomarkers unique to FASD to guide the development of accurate FASD screening tools.

Early Motor Function of Children With Autism Spectrum Disorder: A Systematic Review.

CONTEXT: Early motor impairments have been reported in children with neurodevelopmental disorders (NDD), but it is not clear if early detection of motor impairments can identify children at risk for NDD or how early such impairments might be detected. OBJECTIVE: To characterize early motor function in children later diagnosed with NDD relative to typically developing children or normative data. DATA SOURCES: The Cumulative Index to Nursing and Allied Health Literature, Embase, Medline, PsycINFO, and Scopus electronic databases were searched. STUDY SELECTION: Eligible studies were required to include an examination of motor function in children (0-24 months) with later diagnosis of NDD by using standardized assessment tools. DATA EXTRACTION: Data were extracted by 4 independent researchers. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields checklist. RESULTS: Twenty-five studies were included in this review; in most of the studies, the authors examined children with later autism spectrum disorder (ASD). Early motor impairments were detected in children later diagnosed with ASD. The meta-analysis results indicated that differences in fine, gross, and generalized motor functions between the later ASD and typically developing groups increased with age. Motor function across different NDD groups was found to be mixed. LIMITATIONS: Results may not be applicable to children with different types of NDD not reported in this review. CONCLUSIONS: Early motor impairments are evident in children later diagnosed with ASD. More research is needed to ascertain the clinical utility of motor impairment detection as an early transdiagnostic marker of NDD risk.

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.

Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia.

OBJECTIVES: To estimate the prevalence of fetal alcohol spectrum disorder (FASD) among young people in youth detention in Australia. Neurodevelopmental impairments due to FASD can predispose young people to engagement with the law. Canadian studies identified FASD in 11%-23% of young people in corrective services, but there are no data for Australia. DESIGN: Multidisciplinary assessment of all young people aged 10-17 years 11 months and sentenced to detention in the only youth detention centre in Western Australia, from May 2015 to December 2016. FASD was diagnosed according to the Australian Guide to the Diagnosis of FASD. PARTICIPANTS: 99 young people completed a full assessment (88% of those consented; 60% of the 166 approached to participate); 93% were male and 74% were Aboriginal. FINDINGS: 88 young people (89%) had at least one domain of severe neurodevelopmental impairment, and 36 were diagnosed with FASD, a prevalence of 36% (95% CI 27% to 46%). CONCLUSIONS: This study, in a representative sample of young people in detention in Western Australia, has documented a high prevalence of FASD and severe neurodevelopmental impairment, the majority of which had not been previously identified. These findings highlight the vulnerability of young people, particularly Aboriginal youth, within the justice system and their significant need for improved diagnosis to identify their strengths and difficulties, and to guide and improve their rehabilitation.

Fine motor skills in a population of children in remote Australia with high levels of prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder.

BACKGROUND: Many children in the remote Fitzroy Valley region of Western Australia have prenatal alcohol exposure (PAE). Individuals with PAE can have neurodevelopmental impairments and be diagnosed with one of several types of Fetal Alcohol Spectrum Disorder (FASD). Fine motor skills can be impaired by PAE, but no studies have developed a comprehensive profile of fine motor skills in a population-based cohort of children with FASD. We aimed to develop a comprehensive profile of fine motor skills in a cohort of Western Australian children; determine whether these differed in children with PAE or FASD; and establish the prevalence of impairment. METHODS: Children (n = 108, 7 to 9 years) were participants in a population-prevalence study of FASD in Western Australia. Fine motor skills were assessed using the Bruininks-Oseretsky Test of Motor Proficiency, which provided a Fine Motor Composite score, and evaluated Fine Manual Control (Fine Motor Precision; Fine Motor Integration) and Manual Coordination (Manual Dexterity; Upper-Limb Coordination). Descriptive statistics were reported for the overall cohort; and comparisons made between children with and without PAE and/or FASD. The prevalence of severe (≤ 2nd percentile) and moderate (≤16th percentile) impairments was determined. RESULTS: Overall, Fine Motor Composite scores were 'average' (M = 48.6 ± 7.4), as were Manual Coordination (M = 55.7 ± 7.9) and Fine Manual Control scores (M = 42.5 ± 6.2). Children with FASD had significantly lower Fine Motor Composite (M = 45.2 ± 7.7 p = 0.046) and Manual Coordination scores (M = 51.8 ± 7.3, p = 0.027) than children without PAE (Fine Motor Composite M = 49.8 ± 7.2; Manual Coordination M = 57.0 ± 7.7). Few children had severe impairment, but rates of moderate impairment were very high. CONCLUSIONS: Different types of fine motor skills should be evaluated in children with PAE or FASD. The high prevalence of fine motor impairment in our cohort, even in children without PAE, highlights the need for therapeutic intervention for many children in remote communities.

Prevalence and profile of Neurodevelopment and Fetal Alcohol Spectrum Disorder (FASD) amongst Australian Aboriginal children living in remote communities.

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.

Graphomotor skills in children with prenatal alcohol exposure and fetal alcohol spectrum disorder: A population-based study in remote Australia.

BACKGROUND/AIM: Few studies have examined graphomotor skills in children with prenatal alcohol exposure (PAE) or fetal alcohol spectrum disorder (FASD). METHODS: Graphomotor skills were assessed in 108 predominantly Australian Aboriginal children aged 7.5-9.6 years in remote Western Australia using clinical observations (pencil grasp; writing pressure) and standardised assessment tools (the Evaluation Tool of Children's Handwriting; and the Miller Function and Participation Scales - The Draw-a-Kid Game). Skills were compared between children (i) without PAE, (ii) PAE but not FASD and (iii) FASD. RESULTS: Most children used a transitional pencil grasp and exerted heavy handwriting pressure (83.3% and 30.6% of the cohort). The percentage of letters (M = 62.9%) and words (M = 73.3%) written legibly was low. Children with FASD were more likely than children without PAE to use a cross-thumb grasp (P = 0.027), apply heavy writing pressure (P = 0.036), be unable to write a sentence (P = 0.041) and show poorer word legibility (P = 0.041). There were no significant differences between groups for drawing outcomes, although some children with FASD drew pictures that appeared delayed for their age. There were no significant differences between children without PAE and those with PAE but who were not diagnosed with FASD. CONCLUSIONS: Overall, graphomotor skills were poor in this cohort, but children with FASD performed significantly worse than children without PAE. Findings suggest the need for improved occupational therapy services for children in remote regions and evaluation of graphomotor skills in children with PAE.

Gross motor performance in children prenatally exposed to alcohol and living in remote Australia.

AIM: This study aimed to determine the gross motor (GM) performance of Aboriginal children living in remote Australia. The relationship between GM skills, prenatal alcohol exposure (PAE) and fetal alcohol spectrum disorders (FASD) was explored. METHODS: A population-based observation study was conducted in 2011 to assess motor performance in children living in the Fitzroy Valley, Western Australia, using the Bruininks-Oseretsky Test of Motor Proficiency (BOT-2). BOT-2 data were retrospectively analysed using recently developed software enabling separation of fine and GM outcomes. RESULTS: A total of 108 children (98.1% Aboriginal; 53% male, mean age: 8.7 years) were assessed. Half (52.2%) were exposed to at least 'risky' levels of PAE, and 21 (19%) were diagnosed with an FASD. The mean GM composite score of the cohort (47.0 ± 8.4) approached the BOT-2 normative mean (50.0 ± 10) and was similar between children with and without PAE (P = 0.27). This mean score, however, was significantly lower in children with FASD than without (mean difference: -5.5 ± 20.6; P = 0.006). Compared with children without FASD, children with FASD had significant impairment in subtests for running speed and agility (mean difference ± standard deviation (SD): -2.4 ± 8.1; P = 0.003) and strength (mean difference ± SD:-2.8 ± 9.9; P = 0.004) and (ii) a higher proportion than expected had overall GM impairment (≤2 SD: 9.5%; ≤1 SD: 23.8%). In groups with PAE, no PAE and no FASD, GM function approached expected population norms. CONCLUSIONS: A higher than expected proportion of children with FASD had GM scores that indicated impairment and need for therapy. Evaluation of GM performance should routinely be included in FASD assessment to determine strategies to optimise child development.

Study protocol for screening and diagnosis of fetal alcohol spectrum disorders (FASD) among young people sentenced to detention in Western Australia.

INTRODUCTION: Prenatal alcohol exposure can cause lifelong disability, including physical, cognitive and behavioural deficits, known as fetal alcohol spectrum disorders (FASD). Among individuals with FASD, engagement with justice services is common. Little is known about the prevalence of FASD among young people engaged with the Australian justice system. This study aims to establish FASD prevalence among sentenced young people in detention in Western Australia (WA), and use the findings to develop a screening tool for use among young people entering detention. Translation of these results will guide the management and support of young people in detention and will have significant implications on the lives of young people with FASD and the future of Australian youth justice services. METHODS AND ANALYSIS: Any sentenced young person in WA aged 10-17 years 11 months is eligible to participate. Young people are assessed for FASD by a multidisciplinary team. Standardised assessment tools refined for the Australian context are used, acknowledging the language and social complexities involved. Australian diagnostic guidelines for FASD will be applied. Information is obtained from young people, responsible adults, teachers and custodial officers. Individualised results and management plans for each young person are communicated to the young person and responsible adult. Prevalence of FASD will be reported and multivariate methods used to identify variables most predictive of FASD and to optimise the predictive value of screening. ETHICS AND DISSEMINATION: Approvals have been granted by the WA Aboriginal Health Ethics Committee, University of WA Human Research Ethics Committee, Department of Corrective Services, and Department for Child Protection and Family Support. Anonymised findings will be disseminated through peer-reviewed manuscripts, presentations and the media. Extensive consultation with stakeholders (including government agencies, detention centre staff, community service providers, the young people and their families or carers) will be ongoing until findings are disseminated and translated.

Fetal Alcohol Spectrum Disorders: Using Knowledge, Attitudes and Practice of Justice Professionals to Support their Educational Needs.

BACKGROUND: People with Fetal Alcohol Spectrum Disorders (FASD) can be involved in high risk, socially unacceptable and harmful behaviours and are at high risk of engaging with the justice system. OBJECTIVE: To obtain baseline data on Western Australian justice professionals' knowledge, attitudes and practice relating to FASD to inform the development of FASD resources. METHODS: Cross sectional study using on-line survey methods, descriptive analysis of quantitative data and content analysis methods for qualitative data. RESULTS: 1873 people were invited to complete the survey. A total of 427 (23%) judicial officers, lawyers, corrective services personnel and police completed the survey. The majority had heard of Fetal Alcohol Syndrome (85%) but were less familiar with FASD (60%). Only 16% of respondents identified the key features of FASD as permanent and only 48.4% considered psychological difficulties as important. The majority of legal and judicial officers and approximately half the police officers considered that knowledge about FASD was very relevant to their work. CONCLUSION: There was widespread agreement of the need for more information and training about FASD to optimise outcomes for people with, or suspected of having a FASD, engaging with the justice system.

Visual-motor integration, visual perception, and fine motor coordination in a population of children with high levels of Fetal Alcohol Spectrum Disorder.

BACKGROUND: Visual-motor integration (VMI) skills are essential for successful academic performance, but to date no studies have assessed these skills in a population-based cohort of Australian Aboriginal children who, like many children in other remote, disadvantaged communities, consistently underperform academically. Furthermore, many children in remote areas of Australia have prenatal alcohol exposure (PAE) and Fetal Alcohol Spectrum Disorder (FASD), which are often associated with VMI deficits. METHODS: VMI, visual perception, and fine motor coordination were assessed using The Beery-Buktenica Developmental Test of Visual-Motor Integration, including its associated subtests of Visual Perception and Fine Motor Coordination, in a cohort of predominantly Australian Aboriginal children (7.5-9.6 years, n=108) in remote Western Australia to explore whether PAE adversely affected test performance. Cohort results were reported, and comparisons made between children i) without PAE; ii) with PAE (no FASD); and iii) FASD. The prevalence of moderate (≤16th percentile) and severe (≤2nd percentile) impairment was established. RESULTS: Mean VMI scores were 'below average' (M=87.8±9.6), and visual perception scores were 'average' (M=97.6±12.5), with no differences between groups. Few children had severe VMI impairment (1.9%), but moderate impairment rates were high (47.2%). Children with FASD had significantly lower fine motor coordination scores and higher moderate impairment rates (M=87.9±12.5; 66.7%) than children without PAE (M=95.1±10.7; 23.3%) and PAE (no FASD) (M=96.1±10.9; 15.4%). CONCLUSIONS: Aboriginal children living in remote Western Australia have poor VMI skills regardless of PAE or FASD. Children with FASD additionally had fine motor coordination problems. VMI and fine motor coordination should be assessed in children with PAE, and included in FASD diagnostic assessments.

Soft neurological signs and prenatal alcohol exposure: a population-based study in remote Australia.

AIM: 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). METHOD: 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. RESULTS: 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 was higher in children with than without (1) PAE (r=0.2, p=0.045) and (2) FASD (r=0.3, p=0.004). Half (8/16) of children scoring 'moderate discrepancy' and all (2/2) children scoring 'severe discrepancy' had at least three domains of central nervous system impairment. INTERPRETATION: SNS were more common in children with PAE or FASD, consistent with the known neurotoxic effect of PAE. The QNST-2 is a useful screen for subtle neurological dysfunction indicating the need for more comprehensive assessment in children with PAE or FASD.

Impairment of motor skills in children with fetal alcohol spectrum disorders in remote Australia: The Lililwan Project.

INTRODUCTION AND AIMS: We aimed to characterise motor performance in predominantly Aboriginal children living in very remote Australia, where rates of prenatal alcohol exposure (PAE) are high. Motor performance was assessed, and the relationship between motor skills, fetal alcohol spectrum disorders (FASD) and PAE was explored. DESIGN AND METHODS: Motor performance was assessed using the Bruininks-Oseretsky Test of Motor Proficiency-Second Edition Complete Form, in a population-based study of children born in 2002 or 2003 living in the Fitzroy Valley, Western Australia. Composite scores ≥2SD (2nd percentile) and ≥1SD (16th percentile) below the mean were used respectively for FASD diagnosis and referral for treatment. FASD diagnoses were assigned using modified Canadian Guidelines. RESULTS: A total of 108 children (Aboriginal: 98.1%; male: 53%) with a mean age of 8.7 years was assessed. The cohort's mean total motor composite score (mean ± SD 47.2 ± 7.6) approached the Bruininks-Oseretsky Test of Motor Proficiency-Second Edition normative mean (50 ± 10). Motor performance was lower in children with FASD diagnosis than without (mean difference (MD) ± SD: -5.0 ± 1.8; confidence interval: -8.6 to -1.5). There was no difference between children with PAE than without (MD ± SE: -2.2 ± 1.5; confidence interval: -5.1 to 0.80). The prevalence of motor impairment (≥-2SD) was 1.9% in the entire cohort, 9.5% in children with FASD, 3.3% in children with PAE and 0.0% both in children without PAE or FASD. DISCUSSION AND CONCLUSIONS: Almost of 10% of children with FASD has significant motor impairment. Evaluation of motor function should routinely be included in assessments for FASD, to document impairment and enable targeted early intervention.[Lucas BR, Doney R, Latimer J, Watkins RE, Tsang TW, Hawkes G, Fitzpatrick JP, Oscar J, Carter M, Elliott EJ. Impairment of motor skills in children with fetal alcohol spectrum disorders in remote Australia: The Lililwan Project. Drug Alcohol Rev 2016;35:719-727].

Development of a scale to evaluate midwives' beliefs about assessing alcohol use during pregnancy.

BACKGROUND: Prenatal alcohol exposure is an important modifiable cause of adverse fetal outcomes during and following pregnancy. Midwives are key providers of antenatal care, and it is important to understand the factors which influence their ability to provide appropriate advice and support to women about alcohol use in pregnancy. The main aim of this study was to develop a psychometrically valid scale to evaluate midwives' beliefs about assessing alcohol use during pregnancy. METHOD: A self-administered questionnaire was developed to evaluate midwives' beliefs about assessing alcohol use during pregnancy, including beliefs about positive and negative consequences of asking about alcohol use, and beliefs about capacity to assess alcohol use. The questionnaire was sent to 245 midwives working for a state-wide country health service in Western Australia. Exploratory factor analysis was used to identify the latent constructs assessed by the 36 belief items and provide initial construct validation of the Asking About Alcohol (AAA) Scale. RESULTS: Of the 166 (67.8 %) midwives who responded to the survey, 160 (96.4 %) completed one or more of the belief items and were included in this analysis. Factor analysis identified six subscales which assessed beliefs about discomfort, capacity, effectiveness, role, trust and knowledge. Midwives held the most positive beliefs about their capacity to ask and the effectiveness of asking about alcohol use, and the least positive beliefs about women's knowledge about alcohol use and discomfort associated with asking about alcohol use in pregnancy. Midwives' beliefs about their role and the effectiveness of asking were most strongly associated with the intention to ask all pregnant women about alcohol use during pregnancy (r = -0.59, p < 0.001 and r = -0.52, p < 0.001). CONCLUSIONS: Our analysis has identified key constructs underlying midwives' beliefs about the assessment of alcohol use during pregnancy. The AAA Scale provides a basis for improved clarity and consistency in the conceptualisation and measurement of midwives' beliefs which can be used to enhance our understanding of factors influencing midwives' ability to deliver interventions to prevent alcohol use during pregnancy. The constructs identified in this exploratory analysis require confirmatory analysis to support their validity and generalizability.

Prevalence and patterns of alcohol use in pregnancy in remote Western Australian communities: The Lililwan Project.

INTRODUCTION AND AIMS: Alcohol use in pregnancy is thought to be common in remote Australian communities, but no population-based data are available. Aboriginal leaders in remote Western Australia invited researchers to determine the prevalence and patterns of alcohol use in pregnancy within their communities. DESIGN AND METHODS: A population-based survey of caregivers of all children born in 2002/2003 and living in the Fitzroy Valley in 2010/2011 (n = 134). Alcohol use risk was categorised using the Alcohol Use Disorders Identification Test consumption subset (AUDIT-C) tool. Birth and child outcomes were determined by interview, medical record review and physical examination. RESULTS: 127/134 (95%) eligible caregivers participated: 78% were birth mothers, 95% were Aboriginal and 55% reported alcohol use in index pregnancies; 88% reported first trimester drinking and 53% drinking in all trimesters. AUDIT-C scores were calculated for 115/127 women, of whom 60 (52%) reported alcohol use in pregnancy. Of the 60 women who drank (AUDIT-C score ≥ 1), 12% drank daily/almost daily, 33% drank 2-3 times per week; 71% drank ≥ 10 standard drinks on a typical occasion; 95% drank at risky or high-risk levels (AUDIT-C score ≥ 4). Mean AUDIT-C score was 8.5 ± 2.3 (range 2-12). The most common drinking pattern was consumption of ≥ 10 standard drinks either 2-4 times per month (27%) or 2-3 times per week (27%). DISCUSSION AND CONCLUSIONS: High-risk alcohol use in pregnancy is common in remote, predominantly Aboriginal communities in north western Australia. Prevention strategies to reduce prenatal alcohol use are urgently needed.

Prevalence of fetal alcohol syndrome in a population-based sample of children living in remote Australia: the Lililwan Project.

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 2002/2003 and living in the Fitzroy Valley, in Western Australia (April 2010-November 2011) (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.

Midwives' knowledge, attitudes and practice about alcohol exposure and the risk of fetal alcohol spectrum disorder.

BACKGROUND: Midwives are an influential profession and a key group in informing women about alcohol consumption in pregnancy and its consequences. There are no current quantitative Australian data on midwives' knowledge, attitudes and practice in relation to alcohol consumption during pregnancy and Fetal Alcohol Spectrum Disorder. We aimed to reduce this knowledge gap by understanding midwives' perceptions of their practice in addressing alcohol consumption during pregnancy. METHODS: This cross-sectional study was conducted at 19 maternity sites across the seven health regions of country Western Australia. A questionnaire was designed following review of the literature and other relevant surveys. Midwifery managers of the maternity sites distributed questionnaires to all midwives working in their line of management. A total of 334 midwives were invited to participate in the research and (n = 245, 73.4%) of these were eligible. RESULTS: The response fraction was (n = 166, 67.8%). Nearly all (n = 151, 93.2%) midwives asked pregnant women about their alcohol consumption during pregnancy and (n = 164, 99.4%) offered advice about alcohol consumption in accordance with the Australian Alcohol Guideline, which states "For women who are pregnant or planning a pregnancy, not drinking is the safest option". Nearly two thirds (n = 104, 64.2%) of the midwives informed pregnant women about the effects of alcohol consumption in pregnancy, they did not always use the recommended AUDIT screening tool (n = 66, 47.5%) to assess alcohol consumption during pregnancy, nor conduct brief intervention when indicated (n = 107, 70.4%). Most midwives endorsed professional development about screening tools (n = 145, 93.5%), brief intervention (n = 144, 92.9%), and alcohol consumption during pregnancy and FASD (n = 144, 92.9%). CONCLUSION: Nearly all midwives in this study asked and advised about alcohol consumption in pregnancy and around two thirds provided information about the effects of alcohol in pregnancy. Our findings support the need for further professional development for midwives on screening and brief intervention. Policy should support midwives' practice to screen for alcohol consumption in pregnancy and offer brief intervention when indicated.

Fetal alcohol spectrum disorder: development of consensus referral criteria for specialist diagnostic assessment in Australia.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is known to be under-recognised in Australia. The use of standard methods to identify when to refer individuals who may have FASD for specialist assessment could help improve the identification of this disorder. The purpose of this study was to develop referral criteria for use in Australia. METHOD: An online survey about FASD screening and diagnosis in Australia, which included 23 statements describing criteria for referral for fetal alcohol syndrome (FAS) and FASD based on published recommendations for referral in North America, was sent to 139 health professionals who had expertise or involvement in FASD screening or diagnosis. Survey findings and published criteria for referral were subsequently reviewed by a panel of 14 investigators at a consensus development workshop where criteria for referral were developed. RESULTS: Among the 139 health professionals who were sent the survey, 103 (74%) responded, and 90 (65%) responded to the statements on criteria for referral. Over 80% of respondents agreed that referral for specialist evaluation should occur when there is evidence of significant prenatal alcohol exposure, defined as 7 or more standard drinks per week and at least 3 standard drinks on any one day, and more than 70% agreed with 13 of the 16 statements that described criteria for referral other than prenatal alcohol exposure. Workshop participants recommended five independent criteria for referral: confirmed significant prenatal alcohol exposure; microcephaly and confirmed prenatal alcohol exposure; 2 or more significant central nervous system (CNS) abnormalities and confirmed prenatal alcohol exposure; 3 characteristic FAS facial anomalies; and 1 characteristic FAS facial anomaly, growth deficit and 1 or more CNS abnormalities. CONCLUSION: Referral criteria recommended for use in Australia are similar to those recommended in North America. There is a need to develop resources to raise awareness of these criteria among health professionals and evaluate their feasibility, acceptability and capacity to improve the identification of FASD in Australia.

Recommendations from a consensus development workshop on the diagnosis of fetal alcohol spectrum disorders in Australia.

BACKGROUND: Fetal alcohol spectrum disorders (FASD) are underdiagnosed in Australia, and health professionals have endorsed the need for national guidelines for diagnosis. The aim of this study was to develop consensus recommendations for the diagnosis of FASD in Australia. METHODS: A panel of 13 health professionals, researchers, and consumer and community representatives with relevant expertise attended a 2-day consensus development workshop to review evidence on the screening and diagnosis of FASD obtained from a systematic literature review, a national survey of health professionals and community group discussions. The nominal group technique and facilitated discussion were used to review the evidence on screening and diagnosis, and to develop consensus recommendations for the diagnosis of FASD in Australia. RESULTS: The use of population-based screening for FASD was not recommended. However, there was consensus support for the development of standard criteria for referral for specialist diagnostic assessment. Participants developed consensus recommendations for diagnostic categories, criteria and assessment methods, based on the adaption of elements from both the University of Washington 4-Digit Diagnostic Code and the Canadian guidelines for FASD diagnosis. Panel members also recommended the development of resources to: facilitate consistency in referral and diagnostic practices, including comprehensive clinical guidelines and assessment instruments; and to support individuals undergoing assessment and their parents or carers. CONCLUSIONS: These consensus recommendations provide a foundation for the development of guidelines and other resources to promote consistency in the diagnosis of FASD in Australia. Guidelines for diagnosis will require review and evaluation in the Australian context prior to national implementation as well as periodic review to incorporate new knowledge.

Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia.

BACKGROUND: Australia's commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers. METHODS: As part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process. RESULTS: The on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience. CONCLUSIONS: The successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members.