These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
A validation study of a modified Bouchard activity record
Lor, L., Hill, K., Jacoby, P., Leonard, H., & Downs, J. (2015). A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome. Developmental Medicine & Child Neurology, doi: 10.1111/dmcn.12838. Download snapshot, see article abstract.
Engagement in physical activity, such as walking, is important for individuals with disabilities, particularly for the development and maintenance of motor skills. We compared parent/carer-reported physical activities with the number of steps counted by an accelerometer in girls and women with Rett syndrome.
What we did
Forty-three girls and women (average age 21 years) were recruited from the Australian Rett Syndrome Database. During the waking hours of one day, each wore an accelerometer on their ankle [the StepWatch activity monitor (SAM)] to count their steps. On the same day, a parent/carer completed a modified Bouchard activity record (BAR). The modified BAR is an assessment where the parent/carer records the main type of activity (lying, sitting, standing or walking) for every 15 minute period over the course of the day. Participants were grouped according to walking status (whether or not they required assistance with walking) and responses on the BAR were compared with the number of steps counted by the SAM.
What we found
The responses indicated that individuals who needed assistance with walking spent more time sitting and less time standing compared to those who walked independently. Of those who walked independently, time classified as 'uptime' (both standing and walking) was strongly associated with step count over the 24-hour period. For each additional minute participants spent weight bearing, an additional 29 steps, on average, were taken by those who walked independently.
What it means
Uptime, classified using the BAR, could be used to estimate daily step count in individuals who walked independently. This tool is an inexpensive method for clinicians, therapists, teachers, careworkers and families to gain insights into physical activity and time sitting in girls and women with Rett syndrome. Participation in daily activities and community programs that encourage additional uptime could be an effective way of increasing daily step count. To access a copy of our modified BAR, please click here.
For further reports and findings, see our publications list.