The MeASURe study
Children with autistic spectrum disorder (ASD) are diagnosed from about 2 years old and there is evidence that some early life interventions are effective at helping children with ASD to develop and progress, and have improved quality of life.
A problem faced by researchers and NHS staff is that there are many different measurement tools that can be used to evaluate children’s ASD characteristic behaviours. It is not known whether these tools measure things that are important to the children and their families, or whether healthcare staff and teachers find them useful.
PenCRU were part of a large team of researchers around the UK, led by Professor Helen MacConachie at the University of Newcastle, who carried out a systematic review to answer the research question: "What is the validity of tools and outcome measures used in measuring and monitoring autism spectrum disorder (ASD); and how well do these reflect and measure issues of importance for patients and carers?"
One of PenCRU's roles in the project was involving families by running one of three Parent Advisory Groups. Several parents in our Family Faculty met on four occasions during the research, to suggest what outcomes were important, to prioritise various outcomes, to review parent-completed questionnaires and to comment on the emerging findings. The notes from these meetings are available below.
This research has been completed and the report has been published by the NIHR Health Technology Assessment (HTA) programme and lists the tools used to measure outcomes for children with ASD up to the age of six years, and systematically evaluates their measurement properties and qualities. A plain language and scientific summary of the report are also available.
This research found a striking difference between the outcomes professionals and parents rated as important and minimal evidence about which tools were able to track progress over time or in response to an intervention. The report provides recommendations and priorities for future research in this area.
McConachie H, Parr JR, Glod M, Hanratty J, Livingstone N, Oono IP, et al. Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technol Assess 2015;19(41) doi.org/10.3310/hta19410
McConachie H, Livingstone N, Morris C, Beresford B, Le Couteur A, Gringras P, Garland D, Jones G, Macdonald G, Williams K, Parr JR (2017). Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder. J Autism Dev Disord https://doi.org/10.1007/s10803-017-3282-2