Self-Management in Adolescents and Young Adults with Spina Bifida - Project Summary
Spina bifida (SB) is a congenital birth defect that has multi-systemic effects on physical, neurocognitive, psychological,
and social functioning and requires affected individuals to manage and adhere to a complex medical regimen, while at the
same time managing a unique array of cognitive and psychosocial comorbidities. Nonadherence in this population can
result in costly, life-threatening health complications (e.g., pressure ulcers, acute renal failure), but has received little
attention in the research literature. The goal of this project is to identify targets for self-management, adherence, and
health care transition interventions for youth with SB, which can eventually be applied to other pediatric populations,
especially those with serious CNS conditions (e.g., CP, epilepsy). This study represents a significant new addition to the
Chicago Healthy Adolescent Transition Study (CHATS) and has the following aims: (1) to test the utility of an innovative
longitudinal conceptual model of medical self-management and adherence during the adolescent and late adolescent
developmental periods, and (2) to identify how critical self-management constructs (e.g., the transfer of medical
responsibility from parent to child) are linked with the successful transition from pediatric to adult health care settings.
The current study builds on a study that began in 2006 when the participants were ages 8-15 years. Funding of this
proposal would enable this research team to: (1) complete longitudinal data collection (Time 5) on the self-management
and medical adherence of adolescents and emerging adults with SB (ages 16-23 years) in the context of past and present
biological, neuropsychological, social, and psychological functioning, and (2) begin data collection (Time 6) on the
transition to adult health care when the entire sample reaches emerging adulthood (ages 18-25 years). This study utilizes a
developmentally-oriented, longitudinal model of medical adherence and self-management based on prior models focused
on other pediatric populations. Evaluation of the model will be accomplished with multi-method, multi-informant research
methods, including daily phone diaries, observed family and peer interactions, audio-recorded interviews,
neuropsychological tests, medical chart reviews, and questionnaire measures completed by mothers, fathers, youth, peers,
teachers, and medical providers, as well as a comprehensive assessment of health complications. Theory-driven,
innovative analyses will be possible with multiple longitudinal data points, including the following: (1) longitudinal tests
of moderated meditation models including early individual and environmental self-management factors (Times 1-4),
modifiable self-management mediators and moderators (Time 5), and changes in adherence and health complications
(Times 5-6), and (2) investigation of associations between successful self-management and the successful transition to
adult health care, as mediated by individuals' readiness for the transition to adult care. Based on the findings of this
research, future grant proposals will test the feasibility and efficacy of a two-pronged intervention that will include a self-
management/ adherence intervention as well as a clinic-based intervention to facilitate the transition to adult health care.
Moreover, findings will support the development and dissemination of clinical guidelines for parents and health
professionals, with a focus on self-management skills and the transition from pediatric to adult health care settings.
