Healthy Adolescent and Young Adult Self-Management in Spina Bifida

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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.