Development of a video-based evaluation tool in Rett syndrome

S. Fyfe, J. Downs, O. McIlroy, B. Burford, J. Lister, S. Reilly, C. L. Laurvick, C. Philippe, M. Msall, W. E. Kaufmann, C. Ellaway, H. Leonard

Research output: Contribution to journalArticlepeer-review

Abstract

This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT). Components include a parent-report checklist, and video filming and coding protocols that contain items on eating, drinking, communication, hand function and movements, personal care and mobility. Ninety-seven of the 169 families who initially agreed to participate returned a videotape within 8 months of the first request. Subjects whose videos were returned had a similar age profile to those who did not provide a video but were more likely to have classical than atypical RTT. Evidence of the content and social validity and inter-rater reliability on 11 videos is provided. Video may provide detailed, objective assessment of function and behaviour in RTT.

Original languageEnglish (US)
Pages (from-to)1636-1646
Number of pages11
JournalJournal of Autism and Developmental Disorders
Volume37
Issue number9
DOIs
StatePublished - Oct 2007
Externally publishedYes

Keywords

  • Behavioural phenotype
  • Functional ability
  • Movement disorder
  • Participatory research
  • Rett syndrome
  • Video analysis

ASJC Scopus subject areas

  • Developmental and Educational Psychology

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