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Impact of childhood disability: as perceived by parents and by pediatricians

Study Participants and Setting: 47 ambulatory children with MM (27 males; 9y 11mo, SD 2yr 7 m) and 7 children without MM (5 males; 11yr 1mo, SD 1yr 11mo) from a tertiary children’s hospital. Materials/Methods: Children with MM were classified based on manual muscle testing criteria from the International Myelodysplasia Study Group as sacral (n=18), low lumbar (n=10) or mid lumbar (n=19). All children were asked to wear a StepWatch Activity Monitor (StepWatch, Orthocare Innovations, Mountlake Terrace, WA) on his/her ankle for 8 consecutive days. The StepWatch recorded the time history of steps taken over the monitoring period. Steps were counted, and low activity was defined as ≤30 steps/min, medium activity as ≤60 steps/min and high activity as >60 steps/min. Average steps per day and percent of steps at each activity level were compared among groups using analysis of variance with Bonferroni post-hoc tests. Age was included as a covariate due to known changes in activity with age. Results: The MM groups did not differ from the control group on any demographic or anthropometric measure except for height, with the low lumbar group being slightly shorter than controls (p=0.05). The sacral and low lumbar groups did not differ significantly from the control group on any measure of walking activity. In contrast, the mid lumbar group took significantly fewer steps per day compared to the control group (2356 vs. 4794 steps/day, p=0.006). The mid lumbar group also spent more time being inactive compared to the controls (83% vs. 77%, p=0.09) with a higher percentage of steps at a low activity level (77% vs. 60%, p=0.06) and a lower percentage at medium (22% vs. 37%, p=0.11) and high (0.4% vs. 2.8%, p=0.02) activity levels. Conclusions/Significance: Children with sacral and low lumbar level MM had walking activity similar to children without MM despite any need for braces or assistive devices. However, children with mid lumbar level MM were less active, with fewer steps per day and lower activity levels. This may lead to a greater risk of obesity, osteoporosis, and other secondary conditions in children with higher level involvement.