JMIR Publications

ABSTRACT

Background:

Obesity prevalence in youth with spina bifida is increased when compared to their typically developing peers. Obesity is associated with lifelong medical, psychological, and economic burdens. Successful prevention, and/or treatment of obesity in individuals with spina bifida is compromised by 1) the lack of valid and reliable methods to identify body fat in a clinical setting and 2) limited data on energy expenditure that is necessary to provide daily caloric recommendations.

Objective:

The objectives of this study will be to develop two algorithms for use in youth with spina bifida in a clinical setting, one to model body fat and one to predict total daily energy expenditure. In addition, physical activity and dietary intake will be described for the sample.

Methods:

This multisite prospective national clinical study will enroll 232 youth with myelomeningocele, ages 5-18 (stratified by age and mobility). Participants will be enrolled for one week. Data obtained includes four measures of body composition, up to five height measures, a ramped activity protocol, and a nutrition and physical activity screener. Participants wear an accelerometer for the week. On the final study day two samples of urine or saliva, which complete the doubly labeled water protocol, will be obtained. The analysis will include descriptive, Bland Altman plots, concordance correlation, and regression analysis.

Results:

The study received extramural federal funding in July 2019. Data collection was initiated in March 2020. As of April 2024, 143 (78 female/67 male) of 232 participants have enrolled. Data collection is expected to continue through 2024. A no-cost extension through November 2025 will be requested for data analysis and dissemination of findings.

Conclusions:

This study furthers previous pilot work that confirmed the acceptability and feasibility of obtaining alternate height, body composition, and energy expenditure measures. The findings from this study will enhance screening, prevention, and treatment of abnormal weight status by facilitating the accurate identification of youth’s weight status category and recommendations of daily caloric needs for this population that is at higher risk of obesity. Furthermore, the findings have the potential to impact outcomes for youth diagnosed with disabilities other than spina bifida who experience similar challenges related to alterations in body composition, fat distribution, and/or measurement challenges secondary to mobility issues or musculoskeletal problems.