Recommendation ID

What is the value of a key worker approach (defined by protocol and delivered in addition to usual care) for autistic children and young people in terms of parental satisfaction, functioning and stress and child psychopathology?

Any explanatory notes
(if applicable)

Autism is well characterised as a chronic disorder with lifelong disability in some individuals, yet the current health management structure is usually organised around single episodes of care. The theory and practice of management of chronic illness, as well as widely expressed service-user opinion, indicate that a chronic care model for the organisation of autism services could be appropriate and cost effective.

A key worker approach for autistic children and young people and their families should be formally evaluated in a randomised controlled trial (RCT) reporting short- and medium-term outcomes (including cost-effectiveness) with a follow‑up of at least 6 months and again at 12 months. The outcomes (parental satisfaction, functioning and stress and child psychopathology) should be assessed by structured clinical interviews, parent- and self-reports using validated questionnaires and objective measures of behaviour. The study needs to be large enough to determine the presence of clinically important effects, and mediators and moderators (in particular the child or young person's age) should be investigated.

Source guidance details

Comes from guidance
Autism spectrum disorder in under 19s: support and management
Date issued
August 2013

Other details

Is this a recommendation for the use of a technology only in the context of research? No  
Is it a recommendation that suggests collection of data or the establishment of a register?   No  
Last Reviewed 30/06/2021