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Improving clinical coding for Fetal Alcohol Spectrum Disorder (FASD)

design partner:  https://crackerjac.com/

New clinical codes for Fetal Alcohol Spectrum Disorder (FASD) will help address the FASD data gap

  • New SNOMED CT codes for Fetal Alcohol Spectrum Disorder (FASD) were introduced by NHS England* in April 2024.

  • This makes it possible, for the first time, for clinicians to record a diagnosis of FASD within patients’ electronic records using terms that represent the full spectrum of FASD.

  • Reliable recording of FASD in electronic patient records is crucial for:
    • Monitoring progress against the NICE Quality Standard (QS204)
    • Enabling linkage to other routine data sources (e.g. through creation of a National Linked Database for FASD) to better understand the needs of those living with FASD and its impact at an individual and population level.

We strongly encourage the uptake of these SNOMED CT codes in clinical practice:

1894471000000108: Fetal Alcohol Spectrum Disorder with sentinel facial features (disorder)

1894461000000101: Fetal Alcohol Spectrum Disorder without sentinel facial features (disorder)

2078801000000102 - At increased risk of fetal alcohol spectrum disorder (finding)

These codes can be found on the SNOMED CT browser by searching for ‘FASD’ and have been implemented in the clinical systems EMIS and SystmOne.

  • Improving the clinical coding of FASD will support measurement of key NICE Quality Standard outcomes including:

    • Diagnosis rates for FASD (QS2 and QS4)
    • Average time to diagnosis of FASD (following prenatal alcohol exposure; QS3)
    • Proportion of children and young people diagnosed with FASD who have a management plan (QS5)
    • Health-related quality of life for people diagnosed with FASD (QS5)

Further information about the project and team:

  • The neurodevelopmental disability FASD affects ~2-4% of children in the UK general population1,2 and 27% of Children in Care.3
  • FASD is significantly underreported in routine data due to an historic absence of appropriate clinical codes and reported low-awareness/reluctance to identify/record FASD among clinicians.4,5
  • This has contributed to a scarcity of research and evidence-based support.
  • We (the applicants) led a successful application for new SNOMED FASD codes (consistent with latest SIGN6 and NICE7 Guidance/Quality Standards) for use in clinical practice, offering an opportunity to address this important data and research gap.
  • In 2024, we conducted knowledge mobilisation activities, supported by the University of Bristol Knowledge Mobilisation Catalyst Fund to
  1. Raise awareness of the availability/importance of utilising FASD clinical codes
  2. Discuss facilitators/barriers to use of FASD clinical codes among clinicians
  • Inform co-development of ‘creative communications’ and dissemination strategies.
  • This led to the development of an animation, poster and infographic aimed at improving awareness and uptake of clinical coding for FASD. You can download our animation, infographics and posters aimed at increasing awareness and uptake of SNOMED CT codes for FASD here. Feel free to download these materials and share with your networks.
    Please cite as: McQuire, C., Parsonage, J., Jackson, P., Butcher, S., Mukherjee, R., Millington, L., … Dillon, A. (2024). Improving Clinical Coding for Fetal Alcohol Spectrum Disorder (FASD). Retrieved from osf.io/n2agk

Geographical coverage in the UK

The new SNOMED codes are now available for use in England (e.g. through the EMIS web system). We are hopeful that this will expand to Scotland (estimated 2025) and Wales in the near future.

For areas where the SNOMED clinical codes have not been introduced or where they are not supported by current clinical systems, we would encourage clinicians to document a FASD diagnosis in patient records, where relevant, however they can. This could include, for the time being, using existing codes for FASD (understanding that some systems may only provide a code for a subset of conditions within the FASD continuum, such as Fetal Alcohol Syndrome (FAS)) and/or recording a diagnosis of FASD in free text.

In Scotland and other nations that are not currently using SNOMED CT, we recommend the following codes for clinicians that use International Classification of Diseases:

  • ICD-10:
    • ‘FASD with SFF’ Q86.0 or ‘FASD without SFF’ P04.30 **

**SFF refers to sentinel facial features

  • ICD-11: ‘FASD with SFF’ LD2F.00, or ‘FASD without SFF KA06.2’

Statements of support

“Cheryl and the entire team behind her are doing such important work in identifying ways practitioners can support more efficient and connected care for people with FASD in line with the latest guidance – by taking that critical but often overlooked step of noting it in their electronic records (which I recently discovered has not been done for my own son, diagnosed 10 years ago!). They have my deep respect for creating visually appealing resources that convey complex information in a digestible way for busy people, but maybe more importantly they deserve a shout out for HOW they are doing this work. At every step of the way they have been inviting lived experience not just from parents and carers but from people with FASD themselves. That is how we will finally make progress nationally.”

- Sandra Butcher, Chief Executive, National Organisation for FASD

"The SIGN 156 Guideline Group for Children and Young People Exposed Prenatally to Alcohol recognised that the implementation and audit of the recommendations in the guideline were crucial in order to learn from and progress with support to those living with FASD and their families. This new coding will greatly facilitate, the identification of this important health condition, and ongoing work to look at how supports are improving outcomes."

- Dr Patricia D Jackson OBE, FRCPCH Co-Chair SIGN 156 (FASD)Guideline Group.

"FASD is suggested to the be the single most common cause of neurodevelopmental issues worldwide. For a condition so common, the question that arises is why are we not seeing it then?
Part of the issue is not that it is not there, because when you look it is often found. Rather it is simply not recognised enough. Part of the issue is being able to recognise it,  but also then knowing how to record it it in a way that can be easily accessed and tracked. In one week, I approached two people in positions of influence who told me FASD was both very common and very rare. This cannot happen. By having an accurate and consistent way to record the information, now having these SNOMED codes, once a diagnosis is received, it will begin to help shape the landscape of what is actually being recognised and it a vital step in improving the clinical picture.”

- Professor Raja Mukherjee, Consultant Psychiatrist and National Clinic for FASD lead.

"We’re pleased to support this important initiative which aims to improve the clinical coding of fetal alcohol spectrum disorder in electronic patient records. The three new FASD codes have been implemented in SNOMED CT and will be available for use for all GPs using EMIS and SystmOne. 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."

- Dr Adrian Hayter, Medical Director for Clinical Policy for the Royal College of GPs

Links to further information/resources

National Organisation for FASD

NICE Quality Standard for Fetal Alcohol Spectrum Disorder (FASD) [QS204]

SIGN Guideline for Children and Young People Exposed Prenatally to Alcohol [SIGN 156]

SNOMED CT

References: 

  1. McCarthy R, Mukherjee RA, Fleming KM, et al. Prevalence of fetal alcohol spectrum disorder in Greater Manchester, UK: An active case ascertainment study. Alcoholism: Clinical and Experimental Research. 2021;45(11):2271-2281.
  2. Popova S, Lange S, Probst C, Gmel G, Rehm J. Global prevalence of alcohol use and binge drinking during pregnancy, and fetal alcohol spectrum disorder. Biochem Cell Biol. Apr 2018;96(2):237-240. doi:10.1139/bcb-2017-0077
  3. Gregory G, Reddy V, Young C. Identifying children who are at risk of FASD in Peterborough: working in a community clinic without access to gold standard diagnosis. Adoption & Fostering. 2015;39(3):225-234. doi:10.1177/0308575915594985
  4. Morleo M, Woolfall K, Dedman D, Mukherjee R, Bellis MA, Cook PA. Under-reporting of foetal alcohol spectrum disorders: an analysis of hospital episode statistics. BMC Pediatr. Feb 8 2011;11:14. doi:10.1186/1471-2431-11-14
  5. Burleigh CR, Lynn RM, Verity C, Winstone AM, White SR, Johnson K. Fetal alcohol syndrome in the UK. Arch Dis Child. Oct 2023;108(10):852-856. doi:10.1136/archdischild-2023-325571
  6. Scottish Intercollegiate Guidelines Network (SIGN). Children and young people exposed prenatally to alcohol (SIGN 156): a national clinical guideline. 2019. Accessed April 4, 2023. https://www.sign.ac.uk/our-guidelines/children-and-young-people-exposed-prenatally-to-alcohol/
  7. National Institute for Health and Care Excellence. Fetal alcohol spectrum disorder. Quality standard [QS204]. 2022. Accessed October 6, 2023. https://www.nice.org.uk/guidance/qs204

Contacts

Email: Cheryl.mcquire@bristol.ac.uk

X/Twitter: cheryl_mcquire

Meet the team

Dr Cheryl McQuire (project lead), University of Bristol

Amy Dillon (project co-lead), University of Bristol

James Parsonage, University of Bristol

Dr Patricia D. Jackson, FRCPCH Honorary Fellow University of Edinburgh, Co-Chair SIGN Guideline 156 (FASD)

Prof Raja Mukherjee: NHS Surrey and Borders Partnership, National Clinic for FASD

Sandra Ionno Butcher, Chief Executive, National Organisation for FASD

Dr Louise Millington, NHS South Yorkshire

Andy Boyd, Director UK Longitudinal Linkage Collaboration, University of Bristol

infographic describing the codes for Fetal Alcohol Spectrum Disorder

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