Self-management in youth with spina bifida: predictors of health and quality of life outcomes.

Abstract

This study examined factors associated with health status and quality of life (QOL) in youth with spina bifida. 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. Participants (<i>n</i> = 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. 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.