An Autism Spectrum Disorders (ASD) Database: Regional Pilot for a National ASD Database for Wales, UK

Background:  It is important to have precise information about the prevalence and demographics of service users with ASD. This can help service providers and policy makers to recognise current needs of ASD populations and thereby develop and target suitable services. This project developed a database for this purpose. Prior to the implementation of this database project, not all ASD diagnostic results were being recorded accurately and there was a lack of detail on each ASD diagnosis. 

Objectives:  1) To develop and pilot a regional database in preparation for national rollout across Wales, UK. This database aims to provide 100% coverage of the regional health board child population with accurate ASD diagnostic records, 2) To assess how well ASD was reported before this pilot, and 3) To examine the prevalence of ASD in the regional area after the implementation of the ASD database project. 

Methods:  A module was created to record details of ASD diagnosis within an existing electronic database (the Child Health Database: CCH). Module development included the design of new software to support the new module. Additionally, changes in policy and procedure were implemented. The resulting ASD Diagnostic Report Form was developed and adopted as part of the regional health board’s Minimum Standards for Assessment and Diagnosis of ASD.

Results:  Before implementation of the ASD database project, an average of 1 diagnosis per month was recorded. Following implementation of the project, for the first six months of 2012, an average of 14 diagnoses per month were recorded.  However, occurrence of common genetic co-morbid disorders (e.g. fragile X syndrome and Phenylketonuria (PKU) are well below statistically expected levels.  In 2009, before the project started, 88% of ASD diagnoses in the regional healthboard were not being recorded. Following implementation of the project, more than 60% of diagnoses were being appropriately made by more that three collaborating disciplines. The most frequent collaborators were clinical psychologists, nurses, and psychiatrists. 52% of clinicians in the BCUHB used more than one standardised tool to assist the diagnosis, with ADOS being used for 65% of cases. 

Conclusions: This project has provided a process for ensuring good practice for recording ASD cases on an existing database and has already demonstrated improvements in the rate of reporting. It is most important to prioritise the progression of the ASD database from regional pilot to national roll-out across Wales. Furthermore, the ASD database has already recorded over 1000 cases and will provide potential for clinical and scientific analysis in the future.