Abstract
PURPOSE: This study examined factors associated with health status and quality of life (QOL) in youth with spina bifida. METHODS: Self-management, health complications, comorbidities, global health, and QOL were assessed. Linear and logistic regression models were used to measure associations between respondents' characteristics, self-management scores, and outcomes. RESULTS: Participants (n = 99; 18-27 years old; 87.9% myelomeningocele) were about half female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. An increase in self-management scores was associated with lower odds of comorbid conditions (e.g., diabetes, obesity) by about 30%. Younger age and male sex were associated with better global mental health. Independent living self-management scores were positively associated with individual health-related QOL. The association between independent living self-management and family QOL was positive when executive dysfunction was low. CONCLUSION: This study identified factors important to consider for better health and QOL in populations living with disabilities. As youth enter adult-oriented care, models of care must address declining mental health and provide gender-specific adaptive interventions to increase independent living self-management. As participants gain more independence in self-management, they appear to exhibit reduced risk of comorbid conditions and improvements in their individual health-related QOL and family QOL.