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Towards a Core Outcome Set for Young Children with Autism Spectrum Disorder

Saturday, 4 May 2013: 14:00
Meeting Room 3 (Kursaal Centre)
H. McConachie1, N. Livingstone2, C. Morris3, B. Beresford4, A. S. Le Couteur5, P. Gringras6, D. A. Garland7, J. Parr8, G. Jones9, G. Macdonald2 and K. Williams10, (1)Royal Victoria Infirmary, University of Newcastle, Newcastle upon Tyne, United Kingdom, (2)Institute of Child Care Research, Queen's University Belfast, Belfast, United Kingdom, (3)Child Health Group (PenCRU), University of Exeter, Exeter, United Kingdom, (4)Social Policy Research Unit, University of York, York, United Kingdom, (5)Institute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom, (6)Kings College London, London, United Kingdom, (7)Resource Centre, National Autistic Society, Newcastle upon Tyne, United Kingdom, (8)Institute of Neuroscience, Newcastle University, Newcastle, United Kingdom, (9)Autism Centre for Education and Research, University of Birmingham, Birmingham, United Kingdom, (10)University of Melbourne and Royal Children's Hospital, Parkville, Australia

Young children with autism spectrum disorder (ASD) have widely varying abilities and severity of difficulties. There is some evidence that early interventions are effective in helping children to develop and progress, and improve family quality of life.

            One problem for researchers and service providers is the multitude of measurement tools used to collect evidence about children’s development. These include communication, skills, ASD characteristics, behaviours such as faddy eating, sleep problems and sensory issues, and ways of observing children’s social skills.  We do not know whether such tools match parents’ priorities for their children’s progress, nor whether teachers and other professionals find them useful. 


To present a consultation and review process leading to proposals on what outcomes it is important to measure when monitoring progress of young children with ASD. 


The research team includes ASD experts and review methodologists.  We conducted a review of qualitative literature to explore parents’ priorities for their children with ASD.  Direct consultation was with three parent advisory groups in different parts of UK; and a survey of over 700 professionals working with children with ASD asking what outcomes they currently measure.  The process draws on recommendations of COMET (Core-Outcome-Measures-in-Effectiveness-Trials, which advises on the development and application of agreed standardised sets of outcomes.


More than sixty possible outcomes extracted from the three sources of information were entered into a conceptual framework drawn from the International Classification of Functioning, Disability and Health, i.e. into domains of ‘impairments’, ‘activity limitations’, ‘participation restrictions’, and family measures. The parent groups’ rating of the most important outcomes bears little relationship to what professionals most often measure.


The contrast between what parents consider important outcomes and what professionals actually measure highlights the importance of using a multi-faceted process to reach consensus.  This consultation about WHAT to measure is the first stage in a systematic review of the quality and appropriateness of tools to monitor children’s progress and outcomes, commissioned by the UK National Institute for Health Research.  The next stage will be to systematically search literature about HOW outcomes are measured and review all available evidence about the most robust measurement tools.  Finally we will draw up consensus recommendations of a set of tools, with input from parents, to be used in future by researchers and service providers.

This presentation describes evidence synthesis 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.

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