A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD)

Summary

Diagnostic pathways for children with possible autism. Which work best, for whom, when, and at what cost? 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.

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. The investigators will ask teams and services: What speeds up diagnosis? What delays diagnosis?

The study will be in four work packages:

1. The investigators will review research in the UK and abroad to find evidence and ideas that will help speed up diagnosis.
2. The investigators 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. The investigators 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, the investigators will select around six or eight teams. These teams will be using different and innovative approaches. The investigators will study those approaches. The investigators will talk to clinical staff, managers, referrers, parents and young people. Parents and young people will have gone through the diagnostic process. The investigators will ask parents and young people about their experiences and views. The investigators will review the steps in the diagnosis process for about 70 children in each service. The investigators will find out how long each assessment takes, how much clinical time it takes, and how much it costs. The investigators will compare findings across teams and services.
4. The investigators will have national meetings with autism experts and patient groups. The investigators 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 the investigators take account of the needs of families and the investigators send the findings to people who plan services.

Conditions

• Autism
• Children
• Family
• Diagnoses, Syndromes, and Conditions
• Patient Satisfaction

Interventions

OTHER

Realist evaluation

In-depth exploration of individual service models will be carried out to determine the interrelationship of context, intervention, mechanisms and outcomes as they occur in their natural setting. Data will be gathered within case studies using mixed methods at two levels: (i) service model and (ii) individual child/ family. Methods will include semi structured realist Interviews, focus groups, and document reviews to assemble a comprehensive description of the service and model. Interviewees will include commissioners, service managers, clinicians, referrers, parents and young people. Interviews will be recorded and transcribed, proceeding to qualitative analysis based on components of the programme theory. Regular team meetings will discuss coding, address inconsistencies, and refine collective understanding of coding framework. Coded data will be collated using NVivo software.

Sponsors & Collaborators

• University of Kent

  collaborator OTHER

• University of Surrey

  collaborator OTHER

• Newcastle University

  collaborator OTHER

• Council for Disabled Children

  collaborator UNKNOWN

• Autistica

  collaborator UNKNOWN

• West Sussex Parent Carer Forum

  collaborator UNKNOWN

• Northumberland, Tyne and Wear NHS Foundation Trust

  collaborator OTHER

• Cambridgeshire and Peterborough NHS Foundation Trust

  collaborator OTHER

• Brighton & Sussex Medical School

  collaborator OTHER

• National Health Service, United Kingdom

  collaborator OTHER_GOV

• Sussex Community NHS Foundation Trust

  lead OTHER

Principal Investigators

• Ian Male, Msc MRCP MBBCh · Sussex Community NHS Foundation Trust

Eligibility

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2019-11-30

Primary Completion

2022-06-30

Completion

2022-12-30

Countries

• United Kingdom

Study Locations