People living with Fetal Alcohol Spectrum Disorder (FASD) - one of the most common yet under-recorded neurodevelopmental conditions worldwide - can now have the condition accurately recorded in their medical records thanks to new clinical codes.
Although an estimated 2 to 4% of children in the general UK population and up to 27% of children in care have this disorder, few have the diagnosis documented in their medical records. This lack of proper documentation can lead to significant challenges for individuals with FASD and missed opportunities for better care, research and treatment.
For the first time, thanks to a project led by the University of Bristol, clinicians can now record a diagnosis using codes that represent the full spectrum of FASD within patients' electronic medical records.
The three new FASD codes have been implemented in the clinical vocabulary system SNOMED CT and are available for use for all GPs in England using EMIS and SystmOne. 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.
Led by Dr Cheryl McQuire, Amy Dillon, James Parsonage and colleagues from Bristol's Centre for Public Health, the project brought together a diverse group of stakeholders. These included paediatricians, clinicians, data specialists, third-sector representatives and researchers, to explore the barriers and facilitators to FASD diagnosis and recording.
Together, the team developed materials to support implementation of the new clinical codes. Supported by the Royal Colleges of Psychiatrists and GPs, the materials include free and publicly accessible infographics and animations that help raise awareness of the new codes and how they should be used by clinicians and their teams. These materials can accessed through the project website here.
Dr Cheryl McQuire, Project Lead and 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 (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."
"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.
The project was funded by Bristol's Population Health Science Institute Knowledge Mobilisation Catalyst Award and supported by Bristol Biomedical Research Centre, NIHR School for Public Health Research, National Organisation for FASD, Public Health Scotland, and Surrey and Borders NHS Trust.
