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.

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