Improving the pathway for the diagnosis of autism in children

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Clinical/research team: Dr Stefan Williams, Prof. Mark Mon-Williams, Prof. Barry Wright, Dr David Sims, Dr Kalliopi Konstantopoulou, Owen Johnson, Prof. John Wright
Organisations involved: Bradford Teaching Hospitals NHS Trust, Bradford District Care Trust, The Bradford Shine Partnership, The University of Leeds, The University of York

researchers using health data

Health data scientists will be linking data to understand how to better diagnose childhood autism

Background and Need

Autism is a neurodevelopmental disorder (present from birth) that leads to impaired reciprocal social interaction, communication and stereotyped behaviour.  The impact of this condition is profound but children with autism often wait many years before they are referred to a clinic that can diagnose the condition.  This is often despite considerable family contact with different parts of the health service, and the child struggling within the school environment.  Health professionals and teachers commonly lack the knowledge or confidence to suggest referral for assessment, and thus the pathway through the health service to get a diagnosis is often long and frustrating.

The connection of routine health data with routine education data provides a potential way to understand and ultimately improve the pathway to autism clinic referral.  This is of huge importance to families of children with the condition because there is considerable evidence that earlier diagnosis is associated with better outcomes.  Moreover, early diagnosis will reduce the pressures placed on schools by children with undiagnosed autism, as well as lessening the burden on other clinics and limiting the need for the Child and Adolescent Mental Health Services to deal with the difficulties created when a child is diagnosed at an older age.

Aim and Objectives

Aim: To use linked, routine electronic health and education data to improve the pathway to referral for children with autism in Bradford.

Objectives

  • To quantify, map and model the current patient pathways through the health service leading to referral for autism assessment.
  • To look for associations between early years foundation stage assessment profile (a universal measure taken on all children at the point of school entry) and the diagnosis of autism as coded in routine health records (linking routine education and health data).
  • To pilot the use of routine educational data as a first stage in screening for autism by primary school teachers (using routine data to improve the pathway to autism assessment).

Data sources:

  • Born in Bradford cohort study
  • Primary care data (SystmOne) from Bradford GP practices
  • Bradford Teaching Hospitals Foundation Trust (Joint Autism Clinic)
  • Bradford District Care Trust (CAMHS, Health Visiting Service)

Find out more about the Born in Bradford study