Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders in Australia: An Update
5.5 Potential for under-ascertainment of FASD in Australia
Studies in Australia have predominantly been based on passive surveillance systems, which have a number of limitations, particularly under-ascertainment (May and Gossage 2001). In addition to under-reporting of cases there may also be a lack of recognition and screening of children at risk from alcohol exposure. In the Victorian study, where estimates were based on cases identified from two such systems, the authors noted that inadequate documentation of maternal alcohol use limited their findings (Allen et al. 2007). In particular, there was no record of maternal alcohol use in either the antenatal or infant’s records in 28 percent of the audited population and 39 percent of the microcephalic cases (Allen et al. 2007). Recent Australian research has shown that fewer than half (45 percent) of health professionals surveyed (including Aboriginal health workers, allied health professionals, community nurses, general practitioners and obstetricians) routinely ask pregnant women about alcohol use during pregnancy and only 23 percent of paediatricians do so when taking a pregnancy history (Payne et al. 2005; Elliott et al. 2006). Routine assessment and recording of maternal alcohol use during pregnancy and examination of exposed infants is required before we can confidently estimate the true birth prevalence of FAS in Australia.
Under-diagnosis of FAS may also occur in infants whose mothers are known to have an alcohol-related problem (Little et al. 1990; Stoler and Holmes 1999). In a study by Stoler and Holmes, the medical records of 124 obstetric patients and their offspring were examined (Stoler and Holmes 1999). Sixty-one (49 percent) mothers attended a substance abuse obstetric clinic; however, only 19 (15 percent) of the medical records indicated that a health professional (paediatrician or nurse) had documented alcohol use by the mother during prenatal care. By contrast, the study investigators recorded alcohol use in 34 (27 percent) cases. None of the alcohol-exposed children had been diagnosed with FAS although one was noted to have possible fetal alcohol effects by a paediatrician. However, the study investigators identified two children with FAS and seven with FAE in whom the diagnosis had been missed. This illustrates the need for health professionals to have sufficient knowledge and diagnostic skills to identify children at risk and make the diagnosis.
Little et al. examined 40 infants of women known to have misused alcohol during pregnancy (defined as consumption of four or more alcoholic drinks per day) for signs of FAS or other alcohol-related harms (Little et al. 1990). Six infants of mothers who drank at least six drinks
per day (n=15) were found to have FAS and eleven infants were diagnosed with FAE. Seventeen of the 40 infants had postnatal growth retardation and developmental problems. Although six infants in an unexposed control group had Intrauterine Growth Retardation (IUGR) none of these infants had evidence of either FAS or FAE. It was concerning that none of the infants diagnosed with FAS or FAE in this study had the diagnosis recorded in their medical records, although microcephaly was recorded in 13 medical records. In contrast, all of the infants with a diagnosis of IUGR recorded in the study had this notation in their medical record. These findings are consistent with Australian data in the Australian Paediatric Surveillance Unit (APSU) study: 13 (27 percent) of 92 children who met study criteria for FAS had microcephaly documented at birth (a further 22 children were noted to have microcephaly when diagnosed at a later stage). However, only six (seven percent) had the diagnosis of FAS made at birth (Elliott et al. 2008). Failure to record a diagnosis of an alcohol-related disorder may reflect fear by health professionals of stigmatising the patient and their family (Payne et al. 2005; Elliott et al. 2006).
The reported birth prevalence and incidence of FAS in Indigenous Australian children is much higher than for non-Indigenous children, a finding also reflected in a number of other Indigenous populations (May 1991; Stratton et al. 1996; Sampson et al. 1997; Bower et al. 2000; Harris and Bucens 2003). However, the birth prevalence of FAS for non-Indigenous Australians is one-tenth that reported for other countries (Table 5.1) (Abel 1995; Egeland et al. 1998). This may reflect under ascertainment of cases or the distribution of maternal risk factors and/or lower alcohol intake in our population (Bower et al. 2000; Allen et al. 2007; Peadon et al. 2007). There may also be reluctance to diagnose conditions related to alcohol use in pregnancy because of a lack of services to deal with the condition once diagnosed. For example, a third of WA health professionals surveyed said that lack of referral resources affected their practice of assessing alcohol intake in pregnant women (Payne et al. 2005).
Accurate data are required about rates of FASD in Australia and in specific communities identified as being at risk. Knowledge of the size and nature of the problem is essential to inform service needs and service development for mothers and babies and to inform prevention initiatives. Documenting FASD rates also requires accurate diagnosis which in turn requires training of health professionals.
- Birth prevalence of FASD is most commonly measured through clinic-based studies, passive surveillance systems and active case ascertainment, the latter of which will provide the most accurate data.
- Alcohol use in pregnancy and FASD in Australia are predominantly monitored through passive surveillance systems and under-ascertainment of cases is likely. Use of multiple data sources is beneficial.
- State and Territory-based studies have reported birth prevalence rates of FAS of between 0.01 and 0.68 per 1,000 live births. Prevalence of the other disorders in the FASD spectrum has not been estimated in Australia.
- Several Australian studies have found higher rates of FAS among some Indigenous communities - a finding reflected in the international literature. This likely reflects patterns of alcohol use and other socioeconomic risk factors.
- Under-recognition of FASD in Australia in part reflects a lack of training or awareness among health professionals. Fear of stigmatizing children and families, a lack of diagnostic and support services and interventions for treating children with FASD have also been identified as important.
- Accurate measurement of FASD prevalence is crucial to inform policy, resource and service development in the areas of health, education, justice and community.