Can GPs Diagnose Autism?

Background:

Autism now affects 2.7% of the population (1 in 36 people), with diagnoses increasing by 700% since 1998. This surge has led to overwhelming demand for assessments, but healthcare systems, including the NHS, cannot keep up. As of August 2024, 187,000 people in England are waiting for an autism assessment – a 22% increase from the previous year. NICE recommends a maximum three-month wait for a specialist appointment, yet 90% wait longer. For children, the average NHS wait time from referral to diagnosis is 352 days. The proposed study will examine if the waiting lists could be shortened by moving diagnoses to GP practices.

Aims:

This study will evaluate whether General Practitioners (GPs) can accurately diagnose autism by: (1) comparing GP assessments with specialist diagnoses for accuracy; (2) assessing GP confidence after training; (3) developing web-based screening tools for GPs, and (4) determining the feasibility of GP-led autism diagnosis in primary care.

Method:

GPs participating in the study will complete a novel online training video and module. Up to 250 patients (aged from 18 months old and over) will then be recruited into the study via their local GP practice. Patients and/or their carers will complete age-specific questionnaires, covering autistic traits, sensory processing, and developmental history prior to having up to three consultations with their GP. The GP will decide whether they think the patient is autistic. Each patient will then be seen by a specialist clinician, who will be blind to the GP’s opinion, and who will make a diagnosis to provide a reference standard against which the GP’s opinion will be compared. We will then look at the agreement between GPs and specialist clinicians.

Results:

These will be updated when the study is complete.

Importance:

Delays in diagnosis contribute to mental health challenges, educational underachievement, and physical health conditions. Current diagnostic processes, led by specialist clinicians, are time- and resource-intensive, creating a bottleneck. Reducing assessment times by collecting pre-appointment data and involving GPs in diagnosis could help.

Relevance:

If this research is successful, it could provide evidence that has the potential to cut the waiting time for an autism diagnosis by diverting patients with clear presentations away from specialist clinics and toward their local GP. It could also cut the time taken to administer a diagnostic assessment to 45 minutes. Empowering GPs to make autism diagnoses by being given the tools to do so, will allow complex cases to be diagnosed at specialist clinics, reducing demand and shortening waiting lists.

Engagement:

We have consulted with autistic people and their family members through a survey and focus group. The survey attracted 39 responses from autistic adults and caregivers who read the study overview and provided their feedback on the importance of the study and whether they were supportive of the project. The response was largely supportive – the community saw the study as very important. They also provided some constructive comments regarding the study plan which we explored further in focus group sessions. We conducted focus group sessions with a group of autistic adults and a group of caregivers. Both groups were supportive of the project overall and saw merit in addressing the long waiting lists for autism assessments.  

Funding:

Cambridge University Development and Alumni Relations (CUDAR); Wellcome

Staff:

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