Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth

In 2019, a study,Prevalence of fetal alcohol spectrum disorder among special subpopulations: a systematic review and meta‐analysis, was published by the Centre for Addiction and Mental Health in the journal Addiction. Researchers looked at FAS and FASD prevalence rates for the following five subpopulations:

1. children in care (for example, 32x higher in USA and 40x higher in Chile);
2. correctional (for example, Canadian Correction System 19 x higher);
3. special education;
4. specialized clinical; and
5. Aboriginal populations.

The estimated prevalence of FASD in these special subpopulations was 10–40 times higher compared with the 7.7 per 1000 global FASD prevalence in the general population, with the European Region having the highest overall prevalence at 19.8 per 1000 population and the Eastern Mediterranean Region having the lowest overall prevalence at 0.1 per 1000 population.

Further, it was recently estimated that approximately one in every 13 prenatally alcohol exposed infants will have FASD, which results in approximately 630 000 infants being born with FASD in the world each year. Given that FASD is a life‐long disability, it is estimated that more than 11 million individuals between 0 and 18 years of age, and 25 million individuals between 0–40 years of age, have FASD in the general population world‐wide.

It appears that prenatal alcohol exposure defines a high‐risk population in need of long‐term monitoring.Our ability to develop enhanced care and monitoring of this high‐risk population (individuals with FASD) is limited by the very low rates of diagnosis for all age groups.

For adults, diagnosis is often limited by difficulty determining prenatal alcohol exposure status (especially in cases where the biological mother is unknown) and uncertainty about the adult phenotype of FASD. This is even more problematic in elderly people.

For correctional populations in particular, the setting may also result in a limited diagnostic capacity for FASD. Providing FASD diagnoses is further limited by a lack of resources, an impacted health‐care referral system and stigmatization of maternal alcohol consumption. In addition, current diagnostic guidelines have limited agreement. Diagnostic screening and staff training on FASD in the respective systems/ institutions are crucial in order to ensure that FASD‐affected individuals are receiving the appropriate care and treatment.

The results indicate that there is a critical need for ACA prevalence studies to be conducted among these populations/within these service systems in almost all countries throughout the world.

Measuring and monitoring the prevalence of FASD and alcohol consumption during pregnancy over time in both the general population and population subgroups are crucial for understanding and identifying vulnerable populations, targeting prevention and treatment resources and establishing baselines to evaluate the effectiveness and cost‐effectiveness of prevention and treatment strategies.

A comprehensive surveillance system could also allow for a better understanding of the associated morbidity and mortality rates, quality‐of‐life indicators and service utilization rates of affected individuals. This will reduce the risk of the development of other common adverse outcomes.

In summary: this study identified several important public health issues:

First, based on the existing data, 1 of every 13 pregnant women who consumed alcohol during pregnancy is estimated to have had a child with FASD.

Second, this finding leads to an estimate that more than 1700 infants with FASD are born every day (630 000 every year) globally.

Third, FASD is notably more frequent among special populations (eg, aboriginal populations, children in care, incarcerated populations, and those in psychiatric care). The higher prevalence emphasizes that these high-risk populations deserve special attention for the planning and organization of targeted screening strategies, improved access to diagnostic services, and prevention of maternal alcohol consumption.

Fourth, the burden of FASD is elevated in 76 of the 187 countries included in this study, as demonstrated by having a prevalence of FASD that exceeds 1%. In these countries, the prevalence of FASD among children and youth in the general population is higher than the prevalence of some common birth defects in the United States, such as anencephaly, Down syndrome, spina bifida, and trisomy 18.

Additional Research Information:

From an article by Egon Jonsson, PhD, published in 2019 in the Canadian Journal of Psychiatry

In Canada, like in many other jurisdictions, the prevalence of FASD at the population level is not known. Most older studies of prevalence focused on FAS in certain geographical areas and in specific population groups, such as those in foster care, in correctional systems, in schools, and among indigenous peoples.

The challenge of establishing a true frequency of FASD is more complicated than for most other conditions.:

• Early diagnosis is usually not possible before school age.
• Resources for and training in diagnosing FASD are limited, and
• It may become difficult, or sometimes impossible, to follow up with mothers to get confirmation of alcohol use during pregnancy.
• Above all, FASD does not have an ICD code for administrative and billing purposes and therefore does not show up in administrative databases or in other statistics.

A study from the province of Alberta in 2015 found that the prevalence rate of FASD might be in between 1.42% and 4.38%, if FASD cases, possibly misclassified into a diagnosis that mimics FASD, such as attention-deficit hyperactivity disorder, learning disability, oppositional defiant disorder, mental retardation, nervous system defects, and so forth, are included.

In the USA: A study from a representative state in a Midwestern US community published in 2014 showed a prevalence rate of FASD among first-grader school children of 2.4% to 4.8% (midpoint 3.6%), and another prevalence study from four communities in the US (Rocky Mountain, Midwestern, Southeastern, and Pacific Southwestern) published in 2018 showed an FASD prevalence rate also among first graders ranging from 1.1% to 5%.

Even higher prevalence rates, approximately 2% to 6%, have been reported in studies from the Lazio Region, including Rome in Italy.

Several studies from provinces in South Africa reported that 6% to 8% of school children are affected by the most severe forms of FASD, namely, FAS and partial FAS.

In November 2018, research published in Preventive Medicine revealed up to 17 per cent of children in the United Kingdom could have symptoms consistent with fetal alcohol spectrum disorder (FASD).

Researchers from the University of Bristol and Cardiff University worked with clinicians to assess a wide range of information on mothers’ drinking in pregnancy and studied the development of 13,495 children from Bristol’s Children of the 90s study.

They applied a screening tool and found that up to 79 per cent of children in the sample were exposed to alcohol in pregnancy and that to up to 17 per cent screened positive for symptoms of FASD.

A positive FASD screen was defined as problems with at least three different areas of learning or behaviour, with or without physical anomalies (growth deficiency and distinctive facial features, which include a smooth philtrum, thin upper lip and small eye openings).

Our results showed that a significant number of children screened positive for features consistent with FASD. The results are based on a screening tool, which is not the same as a formal diagnosis. Nevertheless, the high rates of prenatal alcohol use and FASD-relevant symptoms that we found in our study suggest that FASD is likely to be a significant public health concern in the UK.

To find out more about this study visit: University of Bristol

Information from 2018 Campaign:

A report released by the Centre for Addiction and Mental Health earlier this year revealed a prevalence rate of up to 3%.

The results were based on a survey of 2,555 seven – to nine-year-olds in the Greater Toronto Area, one of the largest sample sizes used in a Canadian study and according to the team’s lead researcher, Dr. Svetlana Popova, the first survey reflective of Canada’s diverse population.

We are more confident now, she says, that FASD can happen to anyone, regardless of race, ethnicity, socioeconomic status.

Previous Canadian studies on FASD have focused on narrow groups such as kids in care. They have also relied on medical records to estimate the prevalence of the disorder.

But as Popova explains, many children with FASD are misdiagnosed or not diagnosed at all. So her team — which included leading geneticists, psychologists and pediatricians — independently assessed each student.

The above information is from an article on the Toronto CAS website, however unable to leave link for reference as it is no longer valid.

Dr. Popova explained during media interviews after the release of the report that even 3% was low because reporting of drinking by participants was likely downplayed and less than half responded to requests for participation.

For more information on this Study, and links to news articles, check out: What a week for FASD in Ontario  (last part of page).

Information from Original 2017 Campaign

Keeping with our International theme from yesterday, today’s infographic reports on world-wide prevalence of Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD). The information comes from the report titled:

Estimation of national, regional, and global prevalence of alcohol use during pregnancy and fetal alcohol syndrome: a systematic review and meta-analysis.

by Svetlana Popova, Shannon Lange, Charlotte Probst, Gerrit Gmel, Jürgen Rehm 

This report was published in January 2017 by The Lancet Global Health. Copyright © The Author(s). Published by Elsevier Ltd. You can download the full report by clicking the link above. It is an Open Access article under the CC BY-NC-ND license.

According to the authors:

We aimed to estimate the prevalence of alcohol use during pregnancy and of FAS among the general population, by country, WHO region (ie, African region [AFR], Eastern Mediterranean region [EMR], European region [EUR], region of the Americas [AMR], South-East Asia region [SEAR], and Western Pacific region [WPR]), and globally.

In line with the International Charter on Prevention of FASD, the current study provides the best understanding of the scope of the problem at this time and is intended to both inform and draw the attention of health-care practitioners, public health authorities, policy makers, and government officials.

Although there are currently no confirmed statistics on the number of people in Canada with FASD, the population of Canada in 2017 is 36,634,185.

Rates are estimated anywhere between 1 – 5%:

• 1% = 366,341 people with FASD.
• 3% = 1,099,025 people with FASD.
• 5% = 1,831,709 people with FASD.

Therefore, in Canada, there are between 366,341 – 1,831,709 people with FASD. It is also important to note that the prevalence of FASD is currently unknown. The most commonly cited rough estimate of the prevalence of FASD is 9 per 1,000 (Roberts & Nanson, 2000).

The Canada FASD Research Network (CanFASD) uses a 4% prevalence.

International Statistics 2016

According to a 2016 Health Review (link no longer valid) on FASD by the International Alliance for Responsible Drinking:  Information on the prevalence of FASD, both globally and in individual countries, is scarce, and where it exists, is highly varied and of questionable reliability.

While it has been suggested that, globally, 5% of all pregnancies may result in children with FASD, individual studies cover few countries, where they often focus on small populations. 

The IARD Review reported the following statistics for FASD prevalence:

• Australia: 0.26 per 1,000 live births
• Canada: 9 per 1,000 live births
• Norway: 0.3 per 1,000 births
• Israel: 150 per 1,000 among pre-adoption and foster children
• Italy: 36 per 1,000 school children
• New Zealand: 0.11 per 1,000 births
• South Africa: 113.22 per 1,000 births
• United States: 16.5 per 1,000 school children

If you know of a new prevalence study or report, please leave a comment below so we can continue to update this post with the most up to date information.

Tomorrow we look at cost of FASD.