Healthy Adolescent and Young Adult Self-Management in Spina Bifida

项目总结/摘要 脊柱裂（SB）是最常见的先天性慢性健康状况，涉及中枢神经系统 系统这种慢性健康状况的自我管理（SM）需要一个复杂的日常方案，以解决 广泛的身体残疾、骨科疾病和神经源性肠和膀胱。成功的SM 这一点至关重要，因为这一人群因合并症而早期死亡的风险很高。改善健康和 生活质量（QOL）的个人和他们的家庭生活与这种情况取决于先进的自我， 管理行为、技能和能力，以在整个生命周期中取得更好的成果。建议的K 01 指导研究科学家发展奖将促进博士莫尼克Ridosh在建立一个 独立的研究生涯。Ridosh博士将获得纵向分析统计方法的专业知识， 加强对数量方法认识，通过多种方法提高对家庭测量的认识， 方法（观察，问卷调查和访谈）和多应答者（家庭成员，教师， 医疗保健提供商）数据源，并获得数据科学知识和经验，以应对未来的脊柱裂 相关的转化和临床研究。研究培训将提供一个机会， 纵向数据，以了解具有复杂慢性健康状况的个体自我管理的预测因素 特别是脊柱裂这一培训将在一个强有力的体制环境中提供， 洛约拉大学芝加哥和支持专家跨专业的科学家从护理，心理学， 公共卫生科学和医学。 这个应用程序的目的是确定预测自我管理轨迹的因素 在青少年和年轻的成年人与SB。这一建议将提供证据表明，（1）特点 自我管理的轨迹，（2）识别与自我管理相关的因素，（3）解释家庭如何 因素（家庭功能，压力和感知的家庭支持）调节预测因子之间的关系 自我管理和结果（自我管理，健康状况和QOL）。这些数据将告知 为SB患者及其家庭制定干预措施。 与NINR对自我管理以改善健康和生活质量的科学关注相一致，本研究将 分析青少年和年轻人SM预测因素的现有数据。由于风险因素， SB不良结局（肠和膀胱失禁、活动困难、存在压疮）因 年龄、性别和种族，将确定作为人口统计学因素的函数的轨迹差异。 此外，拟议的分析将确定可能是 以家庭为中心的自我管理干预措施，以改善健康和生活质量，降低相关死亡率 健康并发症。

Project Summary/Abstract Spina bifida (SB) is the most common congenital chronic health condition involving the central nervous system. Self-management (SM) of this chronic health condition requires a complex daily regimen to address a wide range of physical disabilities, orthopedic conditions, and neurogenic bowel and bladder. Successful SM is critical because this population is at high risk for early mortality from co-morbidities. Improving the health and quality of life (QOL) of individuals and their families living with this condition depends on advanced self- management behaviors, skills, and abilities for better outcomes across the lifespan. The proposed K01 Mentored Research Scientist Development Award will facilitate Dr. Monique Ridosh in establishing an independent research career. Dr. Ridosh will gain expertise in statistical methods for longitudinal analysis, strengthen knowledge in quantitative methods, increase knowledge of family measurement through multi- method (observational, questionnaire, and interview) and multi-respondent (family members, teachers, healthcare providers) data sources, and gain knowledge and experience in data science for future spina-bifida related translational and clinical research. Research training will provide an opportunity to examine longitudinal data to understand predictors of self-management in individuals with a complex chronic health condition, specifically spina bifida. This training will be provided in a strong institutional environment at Loyola University Chicago and supported by expert interprofessional scientists from nursing, psychology, public health sciences, and medicine. The objective of this application is to identify factors that predict trajectories of self-management among adolescents and young adults with SB. This proposal will provide evidence that (1) characterizes the trajectory of self-management, (2) identifies factors related to self-management, and (3) explains how family factors (family functioning, stress, and perceived family support) moderate the relationship between predictors of self-management and outcomes (self-management, health status, and QOL). These data will inform development of interventions for this population of individuals with SB and their families. Aligned with NINR’s scientific focus on self-management to improve health and QOL, this study will analyze existing data for predictors of SM in adolescents and young adults over time. Since risk factors for adverse SB outcomes (bowel and bladder incontinence, mobility difficulties, presence of pressure sores) vary by age, gender, and race, differences in trajectories as a function of demographic factors will be determined. Moreover, the proposed analyses will identify salient modifiable factors that may be important components of family-focused self-management interventions to improve health and QOL and reduce mortality associated with health complications.