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Realist Evaluation of Autism Service Delivery: (RE-ASCeD)

How should child development and child and adolescent mental health teams provide timely and cost-effective, high quality diagnostic assessments of children with possible Autism?

Autism is a complex neuro-behaviour condition. People with autism have difficulty with social interaction and in communication with others. They may struggle with change, and repeat actions over and over. Life may be very anxious or stressful. The signs of autism can occur at any age but often appear in the first two years of life. There is no one type of autism, but many, so the condition is now called autism spectrum disorder (ASD). Autism is lifelong but this study is only about children. Caring for a child with autism can be difficult and can sometimes be tough on the whole family.

Specialist doctors diagnose autism. When general practitioners think a child might be on the autism spectrum, they refer them to a specialised team. These specialist teams carry out assessments. The number of children referred for assessment has been increasing recently. Diagnosing autism is not easy. One reason is that different specialist professionals might need to assess children. Another reason is that professionals might assess children for more than one condition. Our recent survey found some families spend over one year waiting for a diagnosis.

The 2019 NHS England Long Term Plan made services for people with autism a priority. The Long-Term Plan aims for more families to get the right help, quicker. To do this, waiting times need to be shorter so children will get the right support sooner. This project aims to guide the people who plan services for families and children. Different teams and services that do autism assessments will help us. We will ask teams and services: What speeds up diagnosis? What delays diagnosis?

The study comprises four work packages:

1. We will review research in the UK and abroad to find evidence and ideas that will help speed up diagnosis.

2. We will survey professionals who work for the specialist teams who diagnose autism. The survey will be about each step in the process and ask which professionals get involved. We will ask about the number of children they see and the time it usually takes to reach a diagnosis. This will give us a picture of the national situation.

3. After the national survey, we will select around six or eight teams. These teams will be using different and innovative approaches. We will study those approaches. We will talk to clinical staff, managers, referrers, parents and young people. Parents and young people will have gone through the diagnostic process. We will ask parents and young people about their experiences and views. We will review the steps in the diagnosis process for about 70 children in each service. We will find out how long each assessment takes, how much clinical time it takes, and how much it costs. We will compare findings across teams and services.

4. We will have national meetings with autism experts and patient groups. We will show them our findings. These groups will agree recommendations for practice. Clinical teams, service managers, commissioners, parents’ groups, and NHS England will receive recommendations.

The research team has specialist expertise in autism, health services, economics, and statistics. The team includes public and NHS England partners. This will ensure we take account of the needs of families and we send the findings to people who plan services.

This study is a collaboration with University of Surrey, Newcastle University, Council for Disabled Children, Autistica and others. See https://www.sussexcommunity.nhs.uk/get-involved/re-asced-research.htm for details.

Research Team:
PI: Dr Ian Male, Consultant Community Paediatrician, Sussex Community NHS Trust, Honorary Senior Lecturer Brighton and Sussex Medical School
Co-PI/project manager: Dr William Farr, Senior Research Fellow in Paediatric Neurodisability, Honorary Clinical Research Fellow Brighton and Sussex Medical School
Methodological expertise, realist evaluation: Tricia Wilson, Professor of Primary and Community Care, CHSS, University of Kent

Start date: 31/10/19 End Date: 30/6/22
Funder: Sussex Community NHS Foundation Trust
Funding: £66,463

Abrahamson, V., Zhang, W., Wilson, P., Farr, W. and Male, I. (2020). A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review. BMJ Open [Online] 10:1-8. Available at: https://bmjopen.bmj.com/content/10/7/e037846.

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Last Updated: 30/10/2020