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Fetal alcohol syndrome in the UK
Charlotte Rebecca Burleigh1, Richard M Lynn2, Chris Verity3
1Neonatal grid trainee, Yorkshire and Humber Deanery, Bradford, UK.
Insights
The UK
Area of Science:
- Pediatric Health
- Public Health Surveillance
- Fetal Alcohol Spectrum Disorders
Background:
- Fetal Alcohol Syndrome (FAS) is a preventable condition linked to prenatal alcohol exposure.
- Accurate incidence data is crucial for public health planning and intervention strategies.
- Previous estimates of FAS incidence in the UK are limited.
Purpose of the Study:
- To determine the incidence of Fetal Alcohol Syndrome (FAS) in children aged 0-16 years in the UK.
- To assess the diagnostic consistency and age at diagnosis for FAS in the UK.
Main Methods:
- Active surveillance using the British Paediatric Surveillance Unit from October 2018 to October 2019.
- Standardized questionnaires were used to collect data from reporting clinicians.
- Included children aged 0-16 years in the UK and Ireland with a diagnosis of FAS.
Main Results:
- An estimated incidence rate of 3.4 per 100,000 live births (95% CI 2.2 to 5.0) was calculated based on 24 newly diagnosed cases.
- The median age at diagnosis was over 5 years, with a wide range from 3 months to over 14 years.
- 148 notifications were received, but many were excluded or withdrawn, indicating diagnostic challenges.
Conclusions:
- The estimated incidence of FAS in the UK appears lower than in similar international studies.
- Significant variation in diagnosis age and a high exclusion rate suggest inconsistencies in FAS diagnosis within the UK.
- There is a strong need for enhanced education for healthcare professionals regarding FAS diagnosis and care.
Objective:
To determine the incidence of fetal alcohol syndrome (FAS) in the UK in children aged 0-16 years.
Design:
Active surveillance was undertaken through the British Paediatric Surveillance Unit between October 2018 and October 2019 inclusive. Data were collected from reporting clinicians using standardised questionnaires.
Patients:
Children aged 0-16 years in the UK and Ireland with a diagnosis of FAS seen in the previous month. This study did not include children with fetal alcohol spectrum disorder.
Main Outcome Measures:
Demographic details (including age and ethnicity), details of exposure, growth parameters, neurological and cognitive diagnoses, and service usage.
Results:
148 notifications were received. After exclusions and withdrawals, there were 10 confirmed and 37 probable cases (analysed together). Just 24 of these children were newly diagnosed with FAS during the surveillance period, giving an estimated incidence rate of 3.4/100 000 live births (95% CI 2.2 to 5.0); their median age at diagnosis was just over 5 years and they were diagnosed between 3 months and 14 years 3 months of age.
Conclusions:
The estimated incidence rate of FAS is lower than reported by similar studies and there was a wide variation in the age that cases were diagnosed. This, combined with the fact that many cases were notified and then withdrawn or excluded, suggests that in the UK there is a lack of consistency and certainty in diagnosing FAS. The study findings strongly support the need to educate key professionals involved in the care of infants and children at risk of FAS.
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