Development of a video-based evaluation tool in Rett syndrome.
A short parent-made video gives reliable, valid scores on eating, communication, hand use, and mobility in Rett syndrome.
01Research in Context
What this study did
Parents filmed their daughters with Rett syndrome at home. The team turned the clips into a checklist that scores eating, talking, hand use, and walking.
They asked 97 families to try it. Two raters watched the same videos to see if they agreed.
What they found
The checklist worked. Raters gave similar scores, so the tool is reliable. Parents said it felt fair and useful.
Doctors agreed the items matched real Rett features, so it has content validity.
How this fits with other research
Castañe et al. (1993) used short clinic clips and saw hand stereotypies that did not change with the room. Fyfe et al. (2007) widened the lens: home video plus parent help caught daily skills, not just stereotypy. The new tool extends the 1993 idea to everyday life.
Snyder et al. (2012) showed a 2-minute video MSWO can rank toys for kids with autism. S et al. prove the same medium can track movement and communication in Rett syndrome. Together they say, "Turn the camera on; just change the checklist to fit the goal."
Shabani et al. (2006) found 10-minute tic counts from video match long home watches. S et al. echo that brief, structured clips give trustworthy data even when the child has severe motor limits.
Why it matters
You no longer need to bring a girl with Rett to clinic for every baseline. Mail the parent a filming guide, score the clip, and you have valid data on four key domains. Use it before treatment, after treatment, or for remote re-assessment.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Send parents a 5-item filming tip sheet, have them record lunch, then score the new checklist.
02At a glance
03Original 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.
Journal of autism and developmental disorders, 2007 · doi:10.1007/s10803-006-0293-9