National Drug Strategy
National Drug Strategy

Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders

Monograph

Fetal Alcohol Spectrum Disorders in Australia: An Update

June 2012

5.4 Incidence and birth prevalence in Australia

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The first estimate of the birth prevalence of FAS in Australia was by Bower et al. who demonstrated the importance of using multiple data sources to increase ascertainment (Bower et al. 2000). When the authors linked the Birth Defects Registry (BDR) and the Rural Paediatric Service database in Western Australia they found the birth prevalence of FAS increased by 38 percent from that estimated from the BDR alone, giving a rate of 0.02 per 1,000 live births for non-Indigenous children and 2.76 per 1,000 for Indigenous children (Bower et al. 2000) (Table 5.1).

Two subsequent studies estimated birth prevalence of FAS in Australia with both finding similar rates to those reported by Bower et al. (Table 5.1). In an passive ascertainment study, the medical charts of all children seen at the Royal Darwin Hospital in the Northern Territory over a 10 year period were reviewed to identify children with FAS and partial FAS (Harris and Bucens 2003). All children identified were Indigenous children. The estimated birth prevalence of FAS was 1.9 per 1000 Indigenous live births and of FAS plus partial FAS was 4.7 per 1000 Indigenous live births. The birth prevalence of FAS for the population overall was 0.68 per 1000 live births and the birth prevalence of FAS plus partial FAS for the population overall was 1.7 per 1000 live births.

In Victoria, estimates of birth prevalence for FAS were calculated using linked data from two passive surveillance systems, the Victorian Perinatal Data Collection and the Victorian Birth Defects Register (Allen et al. 2007). Findings suggested a birth prevalence for FAS of 0.01 to
0.03 per 1000 live births in the general population and no Indigenous cases of FAS were identified.

In a third study, national incidence and birth prevalence figures for FAS were estimated using the Australian Paediatric Surveillance Unit (APSU), an active surveillance system (Elliott et al. 2008). Data between January 2001 and December 2004 were examined. A total of 92 children with FAS were reported to the APSU between 2001 and 2004, of whom 53 percent were male, 35 percent were preterm (less than 37 weeks gestation), and 65 percent were of low birth weight (less than 2.5kg). Most (94 percent) had high risk exposure to alcohol in utero and over three-quarters (78 percent) had been exposed to one or more additional drugs, typically nicotine (six percent) or cannabis (25 percent). The median age at diagnosis was 3.3 years, with a range from newborn to 11.9 years. Almost two-thirds had been diagnosed by
five years of age but only a small proportion (seven percent) was diagnosed at birth.

A range of physical abnormalities were reported among the 92 children with FAS reported to the APSU, including growth deficiency (five percent), microcephaly (53 percent) and central nervous system dysfunction (84 percent). Just under one-quarter (24 percent) had birth defects additional to the facial features required for the diagnosis and a small proportion had sensorineural deafness (five percent) and/or visual impairment (four percent). Behavioural, cognitive and emotional problems were reported in 84 percent of children. In terms of demographic characteristics, 65 percent of the children were Indigenous, half (51 percent) had a sibling with FAS; and only 40 percent lived with a biological parent. The estimated incidence of FAS (based on all 92 children) was also considerably higher in Indigenous than
non-Indigenous children, despite the likelihood that many Indigenous communities are not served by the child health specialists who report to the APSU. The only incidence data on childhood FAS in Australia have come from this prospective national surveillance study (Elliott et al. 2008). The overall incidence was 0.58 per 105 children aged less than 15 years (0.18 in non-Indigenous and 8.11 in Indigenous children), and 1.14 per 105 children under 5 years (0.37 non-Indigenous and 14.60 in Indigenous children) per annum.

The overall birth prevalence (based on children born during the study period) was 0.06 per 1,000 live births (0.004 per 1,000 non-Indigenous children and 0.146 per 1,000 Indigenous children). As can be seen in Table 5.2, the birth prevalence figures are considerably lower than those reported from WA but higher than those reported from SA and Victoria. Although the rates of FAS are likely to have been underestimated in this study, these are the only prospective national data available on FAS throughout the world. The data highlight: the severity, complexity and impact of FAS; the need for effective strategies for prevention; and the need for education to facilitate earlier diagnosis, referral and reporting of cases.

Table 5.1 Prevalence of FAS and FASD in Australia and internationally

Region Study type OutcomeTotal PopulationNon-Indigenous IndigenousAfrican American
International
Review of 35 studies 1973-92 (Abel 1995)Clinic-based studiesFAS1.950.26NA2.29
Alaska 1977-92 (Egeland et al. 1998)Active case ascertainment:
population-based
FAS0.800.203.00
Surveys of Cohorts of Primary School-Aged Children
South Africa – SW Cape 2001 (May et al. 2000)Active case ascertainment:
population-based
FAS--39.2 to 42.9
South Africa – SW Cape 2005 (Viljoen et al. 2005)Active case ascertainment:
population-based
FAS65.2 to 74.2
South Africa – Northern Cape 2001- 2002 (Urban et al. 2008)Active case ascertainmentFAS67.2 (95% CI 56.2 – 79.7)
South Africa – Northern Cape 2001- 2002 (Urban et al. 2008)Active case ascertainmentFAS plus
partial FAS
119.4
(95% CI 93.2-149.9)
74.7
(95% CI 56.2 - 79.7)
Italy (May et al. 2006)Active case ascertainmentFAS3.7 to 7.4 ---
Italy (May et al. 2006)Active case ascertainmentFASD20.3 to 40.5---
Italy 2005-2007 (May et al. 2011)Active case ascertainmentFAS4.0 to 12.0---
Italy 2005-2007 (May et al. 2011)Active case ascertainmentFASD23.1 to 62.6
USA Washington State 2001(Clarren et al. 2001)Active case ascertainmentFAS3.1
USA Western City Pilot 2007 (May et al. 2009)Active case ascertainmentFAS1.4-2.5
USA Western City Pilot 2007 (May et al. 2009)Active case ascertainmentFASD8.1-14.8
USA Western City Pilot 2008 (May et al. 2009)Active case ascertainmentFAS6.4 -11.3
USA Western City Pilot 2008 (May et al. 2009)Active case ascertainmentFASD7.7-13.5
Croatia (Petkovic and Barisic 2010)Active case ascertainmentFAS6.44
Croatia (Petkovic and Barisic 2010)Active case ascertainmentPartial FAS34.33
Australia
Western Australia
Birth Defect Register plus Rural Paediatric Service
1980-1997 (Bower et al. 2000)
Passive surveillance: multiple sources
of reports
FAS0.180.022.76-
Western Australia
Birth Defect Register (including Rural Paediatric
Service) 2000-2004 (Bower et al. 2007)
Passive surveillance: multiple sources
of reports
FAS0.4---
Northern Territory (Harris and Bucens 2003)Passive surveillance: retrospective
medical case notes review
FAS0.68-1.87-
Northern Territory (Harris and Bucens 2003)Passive surveillance: retrospective
medical case notes review
FAS plus
partial FAS
1.7-4.70-
Victorian Perinatal Data Collection and Birth Defects
Register (Allen et al. 2007)
Passive surveillance: multiple sourcesFAS0.01 to 0.030.01 to 0.03--
South Australian Birth Defects Register 1986-2005 (Van Essen et al. 2008) Passive surveillanceFAS0.02---
Australian Paediatric Surveillance Unit (Elliott et al. 2008)Active, prospective surveillance:
reporting by child health specialists
FAS0.060.0040.146-

The Western Australian Birth Defects Registry recorded 74 children born with FAS between 1980-2002 and notified by 2003 (Figure 5.2). Following a Royal Australian College of Physicians workshop on FAS held in May 2004, an additional nine cases were notified for children born 1980-2003, representing a 15 percent increase in birth prevalence. With increasing awareness of FAS resulting from several national research studies and educational seminars and a particular focus being placed in WA on alcohol and pregnancy in recent years, the birth prevalence has increased over time from 0.1 per 1000 in 1980-84 to 0.4 per 1000 for the five year period 2000-2004 (Bower et al. 2007). Variations in birth prevalence of FAS between SA, WA and the NT may reflect variations in case ascertainment, reporting mechanisms, health professional knowledge about FAS and willingness to make a diagnosis, access of populations to specialist paediatric services and/or true differences.

Figure 5.2: Birth prevalence of FASD in Western Australia 1980-2005


Figure 5.2 shows the birth prevalence of FASD in Western Australia 1980-2005.  Birth prevalence rates during this period of time varied from 0.1 per 1000 in 1980-84 to 0.4 per 1000 for the five year period 2000-2004.
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