GPs are being urged to make use of three new clinical codes for Fetal Alcohol Spectrum Disorder (FASD) to help monitor their care and better understand the needs of those with the condition.
A team at Bristol University who were involved in developing the codes which capture the full spectrum of FASD, said the historical underreporting of the condition has contributed to a research gap.
The three SNOMED CT codes have been implemented across EMIS and SystmOne in England and it is hoped will be in place in Scotland and Wales sometime next year.
They classify the condition under three headings:
- Fetal Alcohol Spectrum Disorder with sentinel facial features (disorder)
- Fetal Alcohol Spectrum Disorder without sentinel facial features (disorder)
- At increased risk of fetal alcohol spectrum disorder (finding)
It has been estimated that 2-4% of children in the general UK population and up to 27% of children in care have FASD but few have the diagnosis documented in their medical records, the team from the Centre for Public Health said.
The current lack of proper documentation can lead to significant challenges for individuals with FASD and missed opportunities for better care, research and treatment, they added.
In addition, the Royal College of Paediatrics and Child Health have also included the new FASD codes in the paediatric reference sets for use within their hospital trust and community settings, they noted.
The codes will also help meet NICE quality standards on identification and management of FASD.
Project lead Dr Cheryl McQuire, a research fellow in public health evaluation at Bristol, said: ‘For people with FASD, accurate recording matters as the absence of FASD in their records often leads to “uncomfortable and unnecessary conversations” and makes navigating healthcare more challenging.
‘Reliable recording of FASD in electronic patient records is crucial for monitoring progress against the NICE Quality Standard for FASD and for enabling further linkage to other routine data sources to better understand the needs of those living with FASD and its impact at an individual and population level.
‘Ultimately, people with FASD – which is often a hidden disability – tell us that they want to be “seen”. We hope that the creation of these codes will help enhance awareness, improving diagnosis and care pathways among healthcare providers.’
Dr Adrian Hayter, RCGP medical director for clinical policy said: ‘We’re pleased to support this important initiative which aims to improve the clinical coding of fetal alcohol spectrum disorder in electronic patient records.
‘This should not only increase the recognition and recording of the condition in primary care but be a valuable tool in improving patient care, supporting research, and developing wider surveillance of FASD.’
