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.
Spina bifida is a congenital birth defect that has multi-systemic effects on physical, neurocognitive, psychological, and social functioning and requires individuals to manage and adhere to an intense medical regimen to prevent life-threatening health complications (e.g., pressure ulcers, acute renal failure), while at the same time managing a unique array of cognitive and psychosocial comorbidities. This project will identify potential targets and mechanisms for effective self- management and adherence interventions that will improve psychosocial functioning and reduce the high rates of health complications associated with poor self-management in spina bifida and in other medical populations, such as those with serious CNS conditions. In addition, a focus on self-management in late adolescence and young adulthood allows for a rigorous examination of the transition from pediatric to adult health care, which is often associated with poor self- management, higher rates of costly medical outcomes, and poor quality of life.
| Murray, Caitlin B; Palermo, Tonya M; Holmbeck, Grayson N (2018) A Multimethod, Case-Controlled Study of Sleep-Wake Disturbances in Adolescents With Spina Bifida. J Pediatr Psychol 43:601-612 |
| Driscoll, Colleen F Bechtel; Buscemi, Joanna; Holmbeck, Grayson N (2018) Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study. J Dev Behav Pediatr 39:744-753 |
| Holbein, Christina E; Peugh, James L; Holmbeck, Grayson N (2017) Social Skills in Youth With Spina Bifida: A Longitudinal Multimethod Investigation Comparing Biopsychosocial Predictors. J Pediatr Psychol 42:1133-1143 |
