Measurement in autism spectrum disorder in review
We are pleased to announce publication of the Health Technology Assessment (HTA) report in June 2015.
A further paper entitled "Systematic Review of the Measurement Properties of Tools Used to Measure Behaviour Problems in Young Children with Autism" has been published in PLoS One in December 2015. You can access the paper here:
The MeASURe project started in June 2012. HTA commissioned a review as follows:
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?
1 Technology: Tools for measuring and monitoring aspects of autism (excluding diagnosis).
2 Patient group: Children with autism spectrum disorder up to about 6 years old.
3 Setting: Any appropriate setting.
4 Control: or comparator treatment: n/a
5 Design: A systematic review of qualitative and quantitative tools and outcome measures used in the assessment and monitoring of children with ASD. The validity of the tools and their sensitivity to change should be assessed, as well as their importance to carers. These findings should inform a discussion about the appropriate choice of tools and identify those elements that appear to be most robust and could best inform the future development of a suite of tools for use in research into the effectiveness of interventions for ASD but potentially also for use in clinical practice.
6 Important outcomes: Findings of the systematic reviews, suitability of tools for use in monitoring patients, and research recommendations.
Here is the team who worked on the project:
Helen McConachie - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Jeremy R Parr - Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
Magdalena Glod - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Jennifer Hanratty - School of Sociology, Social Policy and Social Work, Queen’s University Belfast, Belfast, Northern Ireland, UK
Nuala Livingstone - School of Sociology, Social Policy and Social Work, Queen’s University Belfast, Belfast, Northern Ireland, UK
Inalegwu P Oono - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Shannon Robalino - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Gillian Baird - Guy’s and St Thomas’ NHS Foundation Trust, London, UK
Bryony Beresford - Social Policy Research Unit, University of York, York, UK
Tony Charman - Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK
Deborah Garland - National Autistic Society North East Autism Resource Centre, Newcastle upon Tyne, UK
Jonathan Green - Institute of Brain, Behaviour and Mental Health, University of Manchester, Manchester, UK
Paul Gringras - Guy’s and St Thomas’ NHS Foundation Trust, London, UK
Glenys Jones - School of Education, University of Birmingham, Birmingham, UK
James Law - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Ann S Le Couteur - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Geraldine Macdonald - School of Sociology, Social Policy and Social Work, Queen’s University Belfast, Belfast, Northern Ireland, UK
Elaine M McColl - Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Christopher Morris - PenCRU, Child Health Group, University of Exeter Medical School, University of Exeter, Exeter, UK
Jacqueline Rodgers - Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
Emily Simonoff - Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK
Caroline B Terwee - Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands
Katrina Williams - University of Melbourne, Royal Children’s Hospital and Murdoch Childrens Research Institute, Melbourne, Australia
Here is a summary of what we did and what we found:
The MeASURe (Measurement in Autism Spectrum disorder Under Review) project aimed to find the best tools, such as tests and questionnaires, to measure the progress of children with autism up to the age of 6 years.
First, we asked people what they thought it was important to measure. Parents, and children and adults with autism, told us that happiness, anxiety and sensory overload were most important. Health and education staff said they needed tools to measure areas of difficulty. This was because these are important when deciding whether a child has autism, and in finding out what things help them.
Next we found all of the published studies that tracked the progress of children with autism, to find out what tools researchers had used. Between them, these studies used 131 tools, so we then looked for studies that told us how good these tools were when used with children with autism, and evaluated them using the COSMIN guidelines.
We found tools that could be used to monitor some aspects of the progress of young children with autism but not all. There was little or no evidence about whether tools that describe children’s social participation and well-being are useful for children with autism. We found good evidence for the usefulness of a small number of tools that measure autism characteristics and behaviour problems. When we showed these to parents and professionals at a Discussion Day, they pointed out flaws, such as unclear wording and crowded presentation of questionnaires.
New research is needed to improve this situation. Valued outcomes to assess include social communication skills, well-being and quality of family life.
The evidence synthesis was commissioned by the National Institute for Health Research (NIHR) under the Health Technology Assessment programme (HTA Project:11/22/03). The views expressed are those of the authors and not necessarily those of the National Health Service, NIHR or Department of Health. We are grateful for additional financial support provided by the Research and Development Division of the Public Health Agency, Northern Ireland, and by the Mental Health Research Network North East.