Healthy Adolescent and Young Adult Self-Management in Spina Bifida

项目摘要/摘要 脊柱裂是最常见的累及中枢神经的先天性慢性疾病。 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养生法来解决 广泛的身体残疾、骨科疾病以及神经源性肠道和膀胱。成功的SM是 这是至关重要的，因为这一人群因并存而过早死亡的风险很高。改善健康和 患有这种疾病的个人及其家人的生活质量(QOL)取决于先进的自我 管理行为、技能和能力，以期在整个生命周期内取得更好的结果。拟建的K01 指导研究科学家发展奖将促进Monique Ridosh博士建立一个 独立研究生涯。里多什博士将在纵向分析的统计方法方面获得专业知识， 加强定量方法知识，通过多种方式增加家庭测量知识 方法(观察法、问卷调查法和访谈法)和多重受访者(家庭成员、教师、 医疗保健提供者)数据源，并为未来的脊柱裂获取数据科学方面的知识和经验 相关的翻译和临床研究。研究培训将提供一个审查的机会 用纵向数据了解复杂慢性病患者自我管理的预测因素 情况，特别是脊柱裂。这项培训将在强大的机构环境中提供， 洛约拉大学芝加哥分校，并得到来自护理、心理学、 公共卫生科学和医学。 此应用程序的目标是确定预测自我管理发展轨迹的因素 在患有SB的青少年和年轻人中。这项建议将提供证据，证明(1) 自我管理的轨迹，(2)确定与自我管理相关的因素，以及(3)解释家庭如何 因素(家庭功能、压力和感受到的家庭支持)缓和预测因素之间的关系 自我管理和结果(自我管理、健康状况和生活质量)。这些数据将告诉我们 与某人及其家人一起制定针对这一人群的干预措施。 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，这项研究将 随着时间的推移，分析青少年和年轻人中SM的预测因素的现有数据。由于风险因素 SB的不良结局(大便和膀胱失禁、活动困难、存在压疮)因人而异 年龄、性别和种族，将确定作为人口因素函数的轨迹差异。 此外，拟议的分析将确定显著的可修改因素，这些因素可能是 以家庭为重点的自我管理干预措施，以改善健康和生活质量并降低相关死亡率 有健康并发症。

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.