Contextual predictors of self-management and independence trajectories in adolescents and young adults with spina bifida
Prepared by: Christa Weigel
Study type/population: This longitudinal study examined predictors and trajectories of self-management in adolescents and young adults (18-27 years) with spina bifida recruited from four hospitals through a Midwest-based Spina Bifida association. A combination of the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) interviews, caregiver and patient-reported questionnaires, and medical chart reviews were completed over young adulthood to assess socioeconomic, condition-related, and neuropsychological factors potentially impacting self-management ability.
Key findings: Multiple factors were associated with lower independence in self-management at age 18 years from data collected from a total of 99 participants. These factors included lower socioeconomic status, presence of a shunt, higher/thoracic level lesion, and greater executive dysfunction. Growth in self-management during young adulthood (AMIS-II total scores) occurred in all participants, but was not moderated by these socioeconomic, condition-related or neuropsychological factors.
Translation to practice: Successful self-management is necessary to prevent complications and maintain health, especially for individuals with spina bifida who are at high risk for preventable hospitalizations and early mortality from comorbidities. This study provides evidence to support early screening for factors associated with lower independence in self-management as an adolescent or adult and early referral to resources such as vocational rehabilitation, social work and clinical neuropsychological evaluation, and treatment to address potentially modifiable risk factors and optimize independence with self-management over time.