Internet Based System for Managing Obesity in Children with Disabilities

描述（由申请人提供）：与非残疾儿童和其他类型残疾儿童相比，脊柱裂儿童的肥胖、缺乏运动、营养不良和次要健康状况的比例明显更高。他们参与促进健康行为（即体育活动、营养）的能力受到以下因素的极大影响：(a)建筑环境中难以进入的特征（如公园、操场、休闲运动项目、体育课等）；(b)家庭成员在管理子女体重方面缺乏认识或知识；(c)缺乏针对脊柱裂儿童需求的健康促进计划。该应用程序的主要目的是评估信息和通信技术（ICT）系统（被称为POWERS -个性化在线体重和运动反应系统）的使用潜力，为地理位置不同的患有脊柱裂等低发病率残疾的儿童提供个性化的体育活动和营养规划。该理论框架基于首席研究员目前的一项研究，该研究涉及一种混合的远程教学/互联网辅助健康促进干预，该干预证明了患有身体残疾的肥胖成年人成功减肥。该电子健康应用程序将为脊柱裂儿童的父母定制，以帮助他们在儿童目前的家庭、学校和社区的背景下，使用混合的互联网和远程辅导辅助方案，在促进增加体育活动和改善营养方面做出适当的选择。power平台包括：(a)一个广泛的工具包，用于评估与身体活动和营养有关的个人和环境因素，以及一个健康评估清单，检查功能限制和二级健康状况，以便为每个最终用户定制；(b)根据每个儿童的需要和兴趣，并考虑到家庭和社区资源的可用性，制订可实现的具体目标的自动化系统；(c)由训练有素的保健专业人员通过在线通信网络进行远程辅导，以支持关键的保健行为（身体活动、营养）；(d)建立一个反馈系统，使卫生保健提供者和家庭成员能够监测每天在实现体育活动和营养目标方面的进展情况。将对36名脊柱裂儿童（6 - 12岁）进行可行性试点研究，以检验该系统在改善身体活动和营养行为方面的效用。目标结果包括身体活动水平的改变、营养改善、体重和社区参与。该提案扩展了之前的工作：1)进一步完善和评估POWERS平台，2)进行为期12周的可行性试验，以确定干预结果的效应大小，为未来的RCT提供信息。信息和通信技术系统具有内置能力（如果证明有效），可供研究人员和卫生专业人员用于解决与其他残疾人的肥胖差异。

DESCRIPTION (provided by applicant): Children with spina bifida experience significantly higher rates of obesity, physical inactivity, poor nutrition and secondary health conditions compared to non-disabled children and children with other types of disabilities. Their ability to participate in health-promoting behaviors (i.e., physical activity, nutrition) is greatly compromisd by (a) inaccessible features in the built environment (e.g., parks, playgrounds, recreational sports programs, physical education classes, etc.); (b) lack of awareness or knowledge on the part of family members in managing their child's weight; and (c) lack of health promotion programs tailored to the needs of children with spina bifida. The primary aim of this application is to evaluate the potential for use of an Information and Communication Technology (ICT) system, referred to as POWERS - Personalized Online Weight and Exercise Response System, to provide individualized physical activity and nutrition programming to geographically diverse children with low incidence disabilities such as spina bifida. The theoretical framework is based on the Principal Investigator's current research related to a blended telecoaching/internet-assisted health promotion intervention that demonstrated successful weight loss in obese adults with physical disabilities. This e-health application will be customized for parents of children wih spina bifida to assist them in making appropriate choices in promoting increased physical activity and improved nutrition within the context of the child's current home, school and community using a blended internet- and telecoaching-assisted program. The POWERS platform includes: (a) an extensive toolkit that assesses personal and environmental factors associated with physical activity and nutrition and a health appraisal inventory examining functional limitations and secondary health conditions to allow for customization to each end user; (b) an automated system for generating specific, achievable goals tailored to each child's needs and interests and associated with the availability of home and community resources; (c) telecoaching by a trained health professional to support key health behaviors (physical activity, nutrition) through an online communication network; and (d) a feedback system that allows health providers and family members to monitor daily progress toward physical activity and nutrition goals. A feasibility pilot study will be conducted with 36 children with spina bifida (6 o 12 years) to examine the utility of the system in improving physical activity and nutrition behaviors. Target outcomes include changes in physical activity level, improved nutrition, body weight, and community participation. This proposal extends previous work to: 1) further refine and evaluate the POWERS platform, and 2) conduct a 12-week feasibility trial to determine effect size of intervention outcomes to inform a future RCT. The ICT system has the built-in capability (if proven effective) to be used by researchers and health professionals in addressing obesity disparities with other disabled populations.