New NICE guidance on diagnosing fetal alcohol spectrum disorder

The National Institute for Health and Care Excellence (NICE) has published a new comprehensive quality standard designed to improve the diagnosis and assessment of fetal alcohol spectrum disorder.

According to the British Medical Association, fetal alcohol spectrum disorder is the most common, non-genetic cause of learning disability in the UK, although it is often misdiagnosed as autism, Asperger Syndrome or Attention Deficit Hyperactivity Disorder (ADHD).

Currently, there is no known safe level of alcohol consumption during pregnancy and the UK Chief Medical Officers’ low-risk drinking guidelines state that the safest approach is to avoid alcohol altogether to minimise risks to the baby.

The NICE guidance says midwives and other healthcare professionals should give women clear and consistent advice on avoiding alcohol throughout pregnancy, and explain the benefits of this, including preventing fetal alcohol spectrum disorder and reducing the risks of low birth weight, preterm birth and the baby being small for gestational age.

Further reading: Improving outcomes for people living with Fetal Alcohol Spectrum Disorder (FASD

It adds that fetal alcohol spectrum disorder (FASD) is one possibility when prenatal alcohol exposure is being considered as a cause of neurodevelopmental disorder. A neurodevelopmental assessment is needed to confirm, or rule out, a diagnosis of FASD. The neurodevelopmental issues associated with FASD are complex and varied, so the specific aspects of the assessment and the professionals involved will vary.

Confirmation of a diagnosis of FASD (or risk of FASD) ensures the child or young person receives the right treatment, care and support while plans for longer-term management are being made.

Children must have a neurodevelopment management plan

The quality standard highlights five key areas for improvement:

• Pregnant women are given advice throughout pregnancy not to drink alcohol.
• Pregnant women are asked about their alcohol use throughout their pregnancy, and this is recorded.
• Children and young people with probable prenatal alcohol exposure and significant physical, developmental, or behavioural difficulties are referred for assessment.
• Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.
• Children and young people with a diagnosis of FASD have a management plan to address their needs.

These statements are designed to help local service providers identify areas for improvement.

Children with fetal alcohol spectrum disorder often have a poorer quality of life

Dr Paul Chrisp, director of NICE’s centre for guidelines, said: “We know children and young people with FASD often have a poorer quality of life and must overcome some incredibly difficult challenges in their daily lives.

“This quality standard aims to improve the diagnosis and care offered to children and young people with FASD as well as ensuring that women are given consistent advice about their alcohol consumption during pregnancy.

“Data on the number of children and young people in the UK with FASD are limited, with no single reliable source. It’s important that we have clearly defined areas for improvement in place to reflect national priorities, promote best practice and help all those involved in delivering services to provide the very highest levels of care.”

Following consultation, a draft statement that recommended that a mother’s alcohol consumption should be included on the child’s medical records has been changed.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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