Development of a video-based evaluation tool in Rett syndrome

Development of a video-based evaluation tool in Rett syndrome

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

Journal of Autism and Developmental Disorders

2007

Male; Diagnosis Differential; Child; Humans; Adult; Adolescent; Female; Phenotype; Feasibility Studies; Videotape Recording; Movement Disorders/diagnosis/etiology; Rett Syndrome/complications/diagnosis; feeding difficulties; tone and motor problems; Rett syndrome; tool development; scale development; filming and coding protocol

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.

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