Pilot Project 1: Weight-Related Self-Management in Children with Special Health Care Needs

测量能量消耗（EE）的方法在特殊需要中得到了充分研究 (SN)在人口中，依靠轮椅作为主要交通工具的儿童人数更少。 阿姆斯壮这就为在这个高- 高危人群。本研究以个人和家庭自我管理理论为基础， （IFSMT）[1]将提供理解权重的关键结构所必需的信息 通过评估各种测量儿童EE的方法， 患有脊柱裂（SB），一种身体残疾，和患有唐氏综合症（DS）的儿童， 智力残疾。建议可行性研究的目标是：1）确定 实施议定书的主观和客观措施的可行性; 2）确定最佳的 根据佩戴的便利性、可行性和 与双标记水（DLW）标准相比的准确度3）确定 获得两种不同DLW测量（唾液和尿液）的可能性，并评估 每种方法之间的差异;以及，4）确定父母和13岁以上儿童的意愿 完成体力活动（PA）日志以及评估 与DLW标准相比，日志记录。我们的目标是招募27名4-18岁的儿童 按年龄、残疾和行动能力状况（使用轮椅）分层的年龄。我们将获得 儿童的身高、体重、DLW基线尿液和唾液样本，静息代谢车，一般 评估工具。孩子们将佩戴腰部和手腕加速计两周，获取尿液 第2天、第7天和第14天的唾液样本，并且父母和13岁以上的孩子 岁的儿童完成两个工作日和一个周末的定时活动日志， 佩戴加速度计的一周（共四个工作日和两个周末）。数据 分析将包括使用描述性和相关性测试之间的腰部和手腕磨损 加速计、唾液和尿液DLW样本、父母和年龄较大的儿童对总EE的感知 和DLW。这项可行性研究将为研究轨迹奠定基础， 包括对这些慢性病患者饮食、体育活动和自我管理进行更大规模的研究， 条件

Methods to measure energy expenditure (EE) have been understudied in the special needs (SN) population and even less in children who rely on wheelchairs as their primary means of ambulation. This creates a barrier to adequate treatment or prevention of obesity in this high- risk (HR) population. This study, based on the Individual and Family Self-Management Theory (IFSMT) [1] will provide information integral to understanding a crucial construct of weight management in the SN population by evaluating various methods of measuring EE in children with spina bifida (SB), a physical disability, and children with Down syndrome (DS), an intellectual disability. The objectives of the proposed feasibility study are to: 1) determine feasibility of implementing the protocol's subjective and objective measures; 2) determine best placement of accelerometers (waist vs. wrist) based on convenience, feasibility of wearing, and accuracy as compared to the criterion of Doubly Labeled Water (DLW) 3) determine the likelihood of obtaining two different measures of DLW (saliva and urine) and assess the variation between each method; and, 4) identify willingness of parents and children over 13 years of age to complete journaling of physical activity (PA) as well as assess accuracy of journaling as compared to criterion of DLW. Our goal is to recruit 27 children between 4-18 years of age stratified by age, disability and mobility status (wheelchair use). We will obtain the child's height, weight, baseline urine and saliva sample for DLW, resting metabolic cart, general assessment tool. Children will wear a waist and wrist accelerometer for two weeks, obtain urine and saliva samples on day 2, day 7 and day 14, and having the parent and children over 13 years of age complete a timed activity journal for two weekdays and one weekend day of each week that the accelerometers are worn (total of four weekdays and two weekend days). Data analysis will include use of descriptive and correlational tests between waist and wrist worn accelerometers, saliva and urine DLW samples, parental and older child perceptions of total EE and DLW. This feasibility study will lay the groundwork for a trajectory of research that will include a larger study on diet, physical activity and self-management of these chronic conditions.