Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders in Australia: An Update
Alcohol is widely used in Australian society and is an integral part of the social and cultural aspects of Australian life. The majority of Australians consume alcohol at levels that pose a low risk to their health; however, increasing proportions of Australians, particularly young women, have been recorded drinking at risky and high risk levels. Given that approximately half of all pregnancies are reported to be unplanned, it is likely that many women inadvertently expose their unborn child to alcohol before they are aware of their pregnancy. Although the majority of women will abstain or reduce their alcohol intake following pregnancy awareness, a significant proportion will continue to drink alcohol during pregnancy, and some will drink at high risk levels.
Impact of alcohol use on the unborn childAlcohol use during pregnancy has been associated with a number of adverse pregnancy outcomes including miscarriage, premature birth, stillbirth and low birth weight. Alcohol exposure in utero can also cause a range of abnormalities in the unborn child which are included under the umbrella term Fetal Alcohol Spectrum Disorders (FASD). These include, at the more visible end of the spectrum, Fetal Alcohol Syndrome (FAS) and Partial FAS (pFAS), as well as Alcohol Related Birth Defects (ARBD) and Alcohol Related Neurodevelopmental Disorders (ARND).
Importance of other factors in determining the effect of alcoholThe more a woman drinks during pregnancy, the higher the risk to the unborn child. There does not appear to be a linear relationship between the amount of alcohol used in pregnancy and expression of FASD, as not all children exposed to high levels of alcohol in utero will be affected or affected to the same degree. A number of factors moderate this relationship, including the pattern and quantity of alcohol consumption, the stage of development of the fetus at the time of exposure and maternal and socio-behavioural risk factors such as maternal genetics, body composition, nutrition, poverty, smoking, maternal age and increasing parity. This makes it difficult to predict risk in an individual pregnancy.
Women’s knowledge and attitudes to alcohol use in pregnancyWomen’s intention to consume alcohol during pregnancy is associated with: alcohol use in the last pregnancy; the belief that pregnant women should be able to drink alcohol; intention to smoke in a future pregnancy; and neutral or positive attitudes towards alcohol use during pregnancy. Knowledge of adverse effects is not as strong a determinant of intention to drink as are tolerant attitudes towards alcohol use in pregnancy. Thus, simply educating women about potential adverse effects of prenatal alcohol exposure will be insufficient to induce behavioural change. Societal attitudes about alcohol use, particularly during pregnancy, must also be addressed.
Safe use of alcohol in pregnancyAlcohol is a teratogen; that is, exposure during pregnancy may cause birth defects including brain damage. There is sufficient evidence to show that chronic heavy alcohol use or frequent intermittent heavy alcohol use during pregnancy increases the risk of FASD. The most recent research suggests that there is no strong evidence to implicate low levels of prenatal alcohol exposure with clinically evident fetal harm. Recent studies have shown there is only a small margin before there is increased risk, therefore the precautionary approach is to recommend that women abstain from alcohol when planning pregnancy and during pregnancy. Also as stated above, modifiable maternal and fetal factors make prediction of risk in the individual difficult. An abstinence message should be presented in a balanced and rational format and it should be made clear that FASD can be prevented by avoiding alcohol. The current NHMRC Australian Guidelines to Reduce Health Risks from Drinking Alcohol recommend that, for pregnant women and women who are planning pregnancy, ‘not drinking alcohol is the safest option’.
Prevalence and incidence of FAS and FASD in AustraliaCurrently, FAS in Australia is reported by health professionals to Birth Defects Registers in some jurisdictions. However, because contributors are asked to report birth defects rather than syndromes and knowledge about FAS and FASD is poor, it is likely that there is underascertainment of cases. Attempts have been made to estimate birth prevalence of FAS in Western Australia, the Northern Territory, and nationally through the Australian Paediatric Surveillance Unit (APSU). None of these studies was population based, all authors acknowledge under-ascertainment is likely, and data were not systematically collected on the full spectrum of FASD including ARBD or ARND. Routine assessment and recording of maternal alcohol use during pregnancy, education about diagnosis of FAS, population based studies in high risk communities and improved methods of collecting national data are required before we can confidently estimate prevalence rates of FASD in Australia.
Prevention of FASDPrimary, secondary and tertiary prevention strategies to decrease alcohol use in pregnancy and harm to the unborn child should be developed, delivered and evaluated. Prevention of FASD depends on the willingness and ability of women to avoid alcohol in pregnancy. Education of women of child bearing age regarding potential harms of alcohol use in pregnancy and FASD is required but may not change behaviour. A range of prevention initiatives are required across society to change attitudes and behaviour in respect to alcohol use, including during pregnancy. Health professional and community education, which could include a national public health awareness campaign and labelling of alcoholic beverages, is important, but behavioural change is likely to require broader public health strategies.
Services for womenWomen planning pregnancy and pregnant women who drink at levels considered to be moderate and high risk should have access to support services and evidence based treatments. Information about the effectiveness of pharmacotherapies and psychosocial interventions for pregnant women who consume alcohol at risky levels is limited and research involving pregnant women is urgently needed. Several components have been identified as crucial to program success, including the need to consider the broader context in which women live when planning services. Many women who continue to drink at risky and dependent levels during pregnancy experience a range of other difficulties that may require services, including relationship problems, domestic violence, other substance use and mental health problems.
Diagnostic and assessment servicesFor children with FASD, early diagnosis and intervention may substantially reduce the risk of secondary medical, social, emotional and behavioural problems in later life. Early diagnosis of FASD also provides an opportunity for preventing alcohol exposure in future pregnancies. Currently, few specialised diagnostic and assessment services are available in Australia. A recent international audit of diagnostic and evaluation clinics for children exposed to alcohol in pregnancy and/or with FASD highlights the importance of a multidisciplinary approach using trained health professionals. A national approach is required to determine the service needs for Australia and the most appropriate models of care.
Professional education and workforce developmentAdditional education and training in FASD is required at undergraduate and postgraduate levels to increase the knowledge, skills and expertise of health professionals, few of whom have received specific training about FASD. Effective strategies to promote changes in clinical practice include: interactive educational sessions; educational outreach visits by FASD experts; prompts and reminders; auditing of organisational systems to ensure clinicians are able to implement new knowledge; and provision of feedback to clinicians and services. Training alone is insufficient to ensure that changes are successfully implemented and sustained: a wide range of broader organisational changes may also be required.
Interventions for children with FASDAt present, there is a lack of good evidence on the effectiveness of specific therapies for children (and adults) with FASD, although the international literature provides guidance on strategies that may be worth investigating or that are currently being evaluated. The management of children with FASD should be co-ordinated by a developmental paediatrician and/or clinic with access to appropriate medical, allied health professional, educational, disability and community service use.
Economic impact of FASDFASD is associated with a number of poor health outcomes that typically result in high costs to individuals with FASD and their families/carers (private costs) and to the community as a whole (social costs). A number of international studies have estimated the economic cost of FASD (predominantly focusing on FAS), but it has not been possible to develop estimates for Australia. This is due to a lack of accurate data on prevalence and a paucity of details about the needs of families and the frequency of service.
Policy regarding alcohol in pregnancyThe inability to determine a safe level for alcohol intake during pregnancy is reflected in policies and guidelines domestically and internationally. These contain messages that range from abstinence to advice that the risk from low amounts of alcohol is minimal. All Australian medical and nursing organisations that provide guidelines on alcohol and pregnancy have promoted abstinence as either the only option or as the preferable/safest option. Messages about alcohol use need to be credible and well disseminated if they are to be effective and the risk from low levels of alcohol use should not be exaggerated lest women seek a termination when the risk is small. In 2009 the NHMRC published revised guidelines for alcohol use in Australia which included the message that for pregnant women or women planning pregnancy ‘not drinking alcohol is the safest option.’ There is evidence that community knowledge about the guidelines is inadequate, reinforcing that when public health policy is developed, it needs to be widely disseminated in the community and evaluated.
Chapter 12 includes an update on the progress within Australia with respect to FASD.