Prevalence of fetal alcohol spectrum disorder in Greater Manchester, UK: An active case ascertainment study

Abstract

Background: Despite high levels of prenatal alcohol exposure in the UK, evidence on the prevalence of fetal alcohol spectrum disorders (FASD) is lacking. This paper reports on FASD prevalence in a small sample of children in primary school. Methods:A 2-phase active case ascertainment study was conducted in 3 mainstream primary schools in Greater Manchester, UK. Schools were located in areas that ranged from relatively deprived to relatively affluent. Initial screening of children aged 8-9 years used prespecified criteria for elevated FASD risk (small for age; special educational needs; currently/previously in care; significant social/emotional/mental health symptoms). Screen-positive children were invited for detailed ascertainment of FASD using gold standard measures that included medical history, facial dysmorphology, neurological impairment, executive function, and behavioral difficulties.Results: Of 220 eligible children, 50 (23%) screened positive and 12% (26/220) proceeded to Phase 2 assessment. Twenty had a developmental disorder, of whom 4 had FASD and 4 were assessed as possible FASD. The crude prevalence rate of FASD in these schools was 1.8% (95% CI: 1.0%, 3.4%) and when including possible cases was 3.6% (2.1%, 6.3%). None of these children had previously been identified with a developmental diagnosis.Conclusions: FASD was found to be common in these schools and most of these children's needs had not previously been identified. A larger, more definitive study that uses a random sampling technique stratified by deprivation level to select schools is needed to make inferences regarding the population prevalence of FASD.

The prevalence of fetal alcohol spectrum disorders in rural communities in South Africa: A third regional sample of child characteristics and maternal risk factors

“…Second, data produced in these studies have provided findings and insights into more than the prevalence of FASD. Also studied in detail were physi- Third, the consent rate of 77% is not the highest rate we have ever obtained in similar studies in the Western Cape Province, but it is significantly higher than generally obtained in other studies, particularly in more developed countries and communities such as the US (May et al, 2018), Canada (Popova et al, 2019), Italy (May et al, 2011a), and elsewhere in Europe (May et al, 2021b;McCarthy et al, 2021;Okulicz-Kozaryn et al, 2017;Petkovic & Barisic, 2010.…”

“…There have been fifteen active case ascertainment, population-based studies of fetal alcohol spectrum disorders (FASD) published in the recent past for North America (Chambers et al, 2019;May et al, 2014aMay et al, , 2015May et al, , 2018May et al, , 2020aMay et al, , 2020bMay et al, , 2020cMay et al, , 2021aPopova et al, 2019) and Europe (May et al, 2006(May et al, , 2011aMcCarthy et al, 2021;Okulicz-Kozaryn et al, 2017;Petkovic & Barisic, 2010. Most authors of these studies have cited difficulty in accessing populations to study FASD in these more developed countries due to difficulties in obtaining approvals from local communities and institutions and skepticism about the benefits of participation in public health research.…”

‘I'm always up against a brick wall with them’: parents' experiences of accessing support for their child with a newly recognised developmental disorder

“…FASD is thought to affect 0.77% of children globally and 2% in Europe. Estimates for the UK are at 3.24% (Lange et al, 2017), while the first study to assess for FASD directly, in a small sample, suggests a conservative estimate of 1.8% (McCarthy et al, 2021). However, globally, only a small fraction of cases of FASD are diagnosed, and FASDs have been described as an under‐recognised area of special educational needs (Blackburn et al, 2012; Carpenter et al, 2013).…”

“…The Assessing the Prevalence of Developmental Disorders in Greater Manchester Children Study (ADD‐GM) (McCarthy et al, 2021) was an active case ascertainment study that aimed to estimate the prevalence of FASD and other DDs in mainstream schools in England. ADD‐GM was the first study of its kind in the UK and was part of the Greater Manchester Health and Social Care Partnership's wider programme to prevent alcohol‐exposed pregnancies (Reynolds et al, 2021).…”

Fetal alcohol spectrum disorder resources for health professionals: a scoping review protocol

“…Fetal alcohol spectrum disorder (FASD) is one of the leading causes of developmental disabilities that are non-genetic in nature, with a global prevalence of approximately 0.81 1. A closer observation using conservative analytical approaches reveal higher crude prevalence rates in Western countries like the USA (1.1%–5%),2 UK (1.8%)3 and Canada (1.8%) 4. These prevalence statistics highlight the importance of allocating more attention and resources to FASD screening and diagnostic services as well as health promotion initiatives to advance the awareness and prevention of maternal alcohol consumption.…”