Total Energy Expenditure and Body Composition of Children with Developmental Disabilities

Background Obesity prevalence is increased in children with developmental disabilities, specifically in children with spina bifida and Down syndrome. Energy expenditure, a critical aspect of weight management, has been extensively studied in the typically developing population, but not adequately studied in children with developmental disabilities. Objective Determine energy expenditure, fat-free mass and body fat percentile and the impact of these findings on recommended caloric intake in children with spina bifida and Down syndrome. Methods/Measures This pilot study included 36 children, 18 with spina bifida, 9 with Down syndrome and 9 typically developing children. Half of the children with spina bifida were non-ambulatory. Doubly labeled water was used to measure energy expenditure and body composition. Descriptive statistics described the sample and MANOVA and ANOVA methods were used to evaluate differences between groups. Results Energy expenditure was significantly less for children with spina bifida who primarily used a wheelchair (p = .001) and children with Down syndrome (p = .041) when compared to children without a disability when adjusted for fat-free mass. However, no significant difference was detected in children with spina bifida who ambulated without assistance (p = .072). Conclusions Children with spina bifida and Down syndrome have a significantly decreased energy expenditure which directly impacts recommended caloric intake. No significant difference was detected for children with spina bifida who ambulated, although the small sample size of this pilot study may have limited these findings. Validating these results in a larger study is integral to supporting successful weight management of these children

Feasibility and Acceptability of a Self-Report Activity Diary in Families of Children with and Without Special Needs

This study was conducted to examine the feasibility and acceptability of a self-report activity diary completed by parents and older children to assess the child\u27s daily activity in children with and without special needs. The study included 36 child/parent dyads stratified by child age and diagnosis. Parents (n = 36) and children ≥13 years (n = 12) were asked to report on the child\u27s daily activity using an activity diary. Feasibility was determined based on successfully returned diaries and acceptability via post-study interview. Activity diaries were submitted by 94% of the parents and 100% of the children, with 83% and 80%, respectively, successfully completed. Comments provided post-study regarding the diaries were primarily on the format and were generally negative. The activity diary was feasible to use, but not well accepted within our sample of children with and without special needs or their parents. Further research is needed to create valid physical activity assessment measures that are population specific for individuals with special needs

Accuracy of Body Mass Index in Categorizing Weight Status in Children with Intellectual and Developmental Disabilities

PURPOSE: To identify the accuracy of Body Mass Index (BMI) to categorize body weight in a sample of children with spina bifida and Down syndrome as compared to typically developing peers. METHODS: A secondary analysis of 32 children with spina bifida, Down syndrome or no chronic illness. A calculated BMI was plotted on the Centers for Disease Control and Prevention age- and sex-specific BMI growth charts to determine each child’s weight status. Percentage of body fat, obtained by labeled water, was plotted on two different body fat percentile reference curves, one derived from a whole body measure (DXA) of body fat and one by skin-fold measure. Differences in weight categories between calculated BMI and body fat percentile curves were reported. RESULTS: The calculated BMI for children with a disability had significant misclassifications as a screening tool for body fat when compared to children without a disability. Misclassifications were increased with the body fat percentile reference curve derived from skin-fold measures and for children who primarily used a wheelchair. CONCLUSION: The current recommendation to use BMI to categorize weight status is not useful for many children with disabilities. Further research to identify an alternative pragmatic strategy is necessary

Navigator Role for Promoting Adaptive Sports and Recreation Participation in Individuals with Disabilities

Objective The aims of the study were to gain a better understanding of the resources, barriers, and facilitators of participation in adaptive sport and recreational activities as a means of achieving physical activity recommendations in individuals with disability and to understand preferences for a patient navigator service to help mitigate the barriers. Design Clinical, academic, and community stakeholders applied a community-engaged research approach to develop online surveys and focus group questions for adults with a disability or parents of a child with a disability to meet study objectives. Results One hundred ninety-eight adults and 146 parents completed the online surveys. Sixteen adults and 18 parents took part in focus groups. Many participants lacked knowledge of available adaptive sport and recreational resources; other barriers were expense, limited number of trained volunteers, and need for instruction. Conversely, persons were facilitated by community, socialization, and words of encouragement/motivation. Participants strongly preferred a patient navigator to be a person active in adaptive sport and recreational or an informative resource-filled website. Conclusions Our findings suggest that physical activity programs including adaptive sport and recreational should be designed to offer people with disabilities opportunities to build social networks and strengthen social support. A patient navigator service could help increase participation in adaptive sport and recreational and physical activity within a community context