Background: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.
Objectives: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.
Methods: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.
Results: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).
Conclusions: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.
Future Work: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.
To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.
ContributorsMcConachie H, Parr JR, Glod M, Hanratty J, Livingstone N, Oono IP, Robalino S, Baird G, Beresford B, Charman T, Garland D, Green J, Gringras P, Jones G, Law J, Le Couteur AS, Macdonald G, McColl EM, Morris C, Rodgers J, Simonoff E, Terwee CB, Williams K
Disease Category: Child health, Developmental, psychosocial, & learning problems
Disease Name: Autistic spectrum disorder
Age Range: 0 - 6
Sex: Either
Nature of Intervention: Not specified
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient perspectives
- Recommendations for outcome measures (measurement/how)
- Systematic review of outcome measures/measurement instruments
- Semi structured discussion
- Systematic review
- Consensus meeting
- Survey
Stage 1 – identify the main constructs of interest.
Determine outcomes of importance by an initial overview of qualitative literature on parents’ priorities, and by consultation with parents and individuals with ASD. Determine outcomes and issues of importance for clinicians and educators.
The work will be led by three sets of working groups. The Methods Advisory Group will draw conclusion about the most robust measures. Three Parent Advisory Groups will be set up to advise on the most important constructs to be measured. A Professional Reference Group will consider which constructs are important in monitoring children’s progress, and what batteries of measures might offer clinical or educational practice.
Consultation with young people with ASD – we will seek advice from young people with ASD who are older than 6 years and able to comment at least on their own lives, and what has mattered to them in relation to their experiences, their own characteristics, and what has made them happy/unhappy. These reflections will highlight important outcomes that should be measured.
Analysis of these sources of evidence will be made by the group leads and the CI through review of the findings from each source and consensus discussion by teleconference.
Stage 2 – identify the tools that are used to measure these constructs
Stage 3 – identify the tools with the nest measurement properties
Stage 4 – propose a battery of tools for future use in outcome studies and monitoring