A validation study of a modified Bouchard activity record that extends the concept of ‘uptime’ to Rett syndrome

Lor, Leon; Hill, Kylie; Jacoby, Peter; Leonard, Helen; Downs, Jenny

doi:10.1111/dmcn.12838

Cited by 14 publications

(22 citation statements)

References 25 publications

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“…Performing transition movements such as sit to stand are believed to be influenced by dyspraxia and are typically difficult in Rett syndrome, 2 although once assisted to the standing position, those who can walk will usually take steps. 21 We have previously observed that, compared with those unable to walk, maintenance of walking skills is associated with less marked progression of scoliosis. 3 Extending our understanding for those with walking skills, scoliosis had little relationship with the amount of activity.…”

Section: Discussionmentioning

confidence: 98%

Quantification of walking‐based physical activity and sedentary time in individuals with Rett syndrome

Downs

Leonard

Wong

et al. 2017

Develop Med Child Neuro

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AIM To quantify, in individuals with Rett syndrome with the capacity to walk, walking-based activity and sedentary time, and to analyse the influences of age, walking ability, scoliosis, and the severity of epilepsy. METHOD Sixty-four participants with a mean age of 17 years and 7 months (standard deviation [SD] 9y) were recruited from the Australian Rett Syndrome Database for this cross-sectional study. Each participant wore a StepWatch Activity Monitor for at least 4 days. Linear regression models were used to assess relationships between daily step count and the proportion of waking hours spent in sedentary time with the covariates of age group, walking ability, presence of scoliosis, and frequency of seizures. RESULTS On average, 62% (SD 19%) of waking hours were sedentary and 20% (SD 8%) was at cadences lower than or equal to 20 steps in a minute. The median daily steps count was 5093 (interquartile range 2026–8602). Compared with girls younger than 13 years of age and accounting for the effects of covariates, adults took fewer steps, and both teenagers and adults had more sedentary time. INTERPRETATION Teenagers and adults led the least active lives and would appear to be in particular need of interventions aiming to optimize slow walking-based physical activity and reduce sedentary time.

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Section: Discussionmentioning

confidence: 98%

Quantification of walking‐based physical activity and sedentary time in individuals with Rett syndrome

Downs

Leonard

Wong

et al. 2017

Develop Med Child Neuro

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“…There is growing recognition of the importance of physical activity for individuals with disability and clinicians are ideally placed to recommend services and support, and we have already developed measures to identify walking-based functional skill 7 and activity. 8,9 In individuals with capacity to walk, steps were accurately measured using the StepWatch Activity Monitor™ (SAM) compared with other accelerometer devices including the activPAL™. 8 Using a modified Bouchard activity record (BAR), 10 the duration of standing and walking activities or 'uptime' was strongly associated with the number of daily steps.…”

Section: Introductionmentioning

confidence: 99%

Measurement of Sedentary Behaviors or “Downtime” in Rett Syndrome

et al. 2017

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This study aimed to validate measures of sedentary time in individuals with Rett syndrome. Twenty-six individuals (median [IQR] age 16.0 (9.4-20.6) years) wore an activPAL accelerometer during video-taped activities and agreement was determined between sedentary time determined by the activPAL and observation. For 11 individuals (median [IQR] age 14.5 (11.5-25.6) years), linear regression was used to determine the relationship between sedentary time recorded on the modified Bouchard activity record diary card and measured using the activPAL. In comparison to observation, the activPAL accurately measured duration of sedentary time with a mean difference (limit of agreement) of -1.0 (6.3) minutes. The duration of Bouchard activity record downtime accounted for 73% of the variance of sedentary time measured by the activPAL (coefficient 0.762, 95% CI 0.413 to 1.111). These data provide clinicians and caregivers with capacity to investigate strategies that would aim to increase activity in the nonexercise component of the activity continuum.

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“…In Australia, researchers have developed and validated measures of gross motor capacity [11,16] and gross motor performance [15,17] which include walking. A specific measure of functional walking capacity and a brief measure of walking performance have not yet been reported in RTT.…”

Section: Introductionmentioning

confidence: 99%