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Building capacity for rigorous controlled trials in autism: the importance of measuring treatment adherence
H McConachie1, S Fletcher-Watson,
1Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Insights
Measuring parent adherence in early autism intervention is crucial but often overlooked. Few studies assess how parents implement strategies, hindering large-scale European trials for children with autism.
Area of Science:
- Child Psychology
- Developmental Neuroscience
- Clinical Psychology
Background:
- European research groups are collaborating on early intervention for preschool children with autism.
- Developing multi-site randomized controlled trials (RCTs) requires robust methods for evaluating parent-mediated therapies.
Purpose of the Study:
- To assess current practices in measuring parent adherence in early autism intervention studies.
- To identify challenges and needs for future pan-European early intervention RCTs.
Main Methods:
- Systematic review of parent-mediated early intervention studies in autism.
- Analysis of data from a Cochrane Collaboration review and a mapping of European studies (post-2002).
- Focus on methods used to describe and assess parent adherence to therapeutic strategies.
Main Results:
- Less than half of the 32 reviewed studies included any measure of parent adherence.
- Only seven studies utilized a direct assessment method for parent adherence.
- Significant challenges exist for pan-European studies, including outcome selection, tool translation, and assessor training.
Conclusions:
- Current measurement of parent adherence in early autism intervention is insufficient.
- Further research is needed on parent-child interaction and adherence measurement for effective early intervention.
- Standardized methods are essential for successful multi-site European trials in autism intervention.
Abstract:
Research groups across Europe have been networking to share information and ideas about research on preschool children with autism. The paper describes preliminary work to develop capacity for future multi-site randomized controlled trials of early intervention, with a specific focus on the need to measure treatment adherence where parents deliver therapy. The paper includes a review of randomized and controlled studies of parent-mediated early intervention from two sources, a recent Cochrane Collaboration review and a mapping of European early intervention studies in autism published since 2002. The data extracted focused on methods for describing parent adherence, that is, how and to what extent parents carry out the strategies taught them by therapists. Less than half of the 32 studies reviewed included any measure of parent adherence. Only seven included a direct assessment method. The challenges of developing pan-European early intervention evaluation studies are discussed, including choice of intervention model and of important outcomes, the need for translation of measurement tools and achievement of joint training to reliability of assessors. Measurement of parent-child interaction style and of adherence to strategies taught need further study.
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