Evidence of Robust Tools for the Evaluation of Outcomes in Young Children with ASD

Background:  

One problem for researchers evaluating early intervention, and for providers of services for young children with autism spectrum disorder (ASD), is the multitude 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, behaviour and play; participation outcomes such as social inclusion; and parent and family impact. Each type of outcome has multiple tools which might be used; however, systematic appraisal of the measurement properties of these tools, and qualities such as ease of use and acceptability to children and parents is lacking. This systematic review was commissioned by the UK National Institute for Health Research. 

Objectives:  

To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to age 6 years.  Further, to identify outcome areas in which evidence is lacking.

Methods:  

The MeASURe research collaboration includes ASD experts and review methodologists. We undertook:

A: systematic review of tools used in ASD early intervention and longitudinal studies from 1992 to 2013.

B: systematic review of papers addressing the measurement properties of identified tools in children with ASD, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments).

C: synthesis of evidence and gaps, and consultation about recommendations with stakeholders including parents, young people with ASD, clinicians, and researchers.

Results:  

The conceptual framework for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains of ‘impairments’, ‘activity limitations’, ‘participation restrictions’, and family measures. In A, 10,261 papers were sifted, 3088 by full text, and data extracted from 181.  In total 129 tools were identified, excluding observational coding, those developed for a particular study and those not in English. In B, 2,793 papers were sifted and data extracted from 128 concerning 52 (40%) tools. For the remainder, no measurement properties study including children with ASD was identified.

The review will be completed in March 2014.  Evidence for the measurement properties of tools will be presented, along with information about their accessibility and strengths/weaknesses in use. The obvious gaps in available assessment tools include measurement of wellbeing and participation outcomes for children, and family quality of life.

Conclusions:  

This is the first review of the quality and appropriateness of tools to monitor young children’s progress and outcomes which has collated systematically the available evidence on measurement properties of the tools.  With input from parents and other stakeholders, we will present consensus recommendations about a set of tools 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.