The growing congenital heart disease adolescent survivor population faces two major health disparities in care: (1) poor care transition (an age and developmentally appropriate process, addressing the medical, psychosocial and educational/vocational aspects of care) from child-centered to adult-centered healthcare; and (2) lack of appropriate transfer of care (the point at which an adult cardiac provider assumes the medical care of a CHD patient). The transition period is a vulnerable time for adolescents with CHD, and many drop-out from active health care. Dropping out leads to poor health outcomes, and does not allow for appropriate transfer to adult care. The newly validated SMART (Socio-ecological Model of Adolescent & young adult Readiness for Transition) model has the potential to improve this process, by targeting modifiable variables for intervention in the transition and transfer process through assessments of five parameters: adolescent socio-demographics, disease characteristics and knowledge, skills/self-efficacy, relationships and psychosocial functioning. Using SMART, our research will engage CHD adolescents and promote transition and transfer using a modality that universally defines their generation: mobile technology. The overall objective of this proposal is to identify transition needs for CHD adolescents, facilitate transfer of care, and adapt SMART for these needs by developing and piloting an interactive e-health (mobile based) platform that will promote the key knowledge and skills that adolescents need to successfully transition and transfer to adult care. The mobile-based platform will target modifiable variables to improve transition and transfer of care for CHD adolescents. To achieve these goals, the Specific Aims include:
Aim 1 : Complete a stakeholder needs assessment of CHD adolescents, parents, pediatric cardiology and adult congenital providers. We will assess baseline competencies in self-management, key skills, health literacy (HL), and transition readiness (TR) of CHD adolescents. Hypothesis: Low adolescent HL scores will correlate with low TR and low parental HL. Needs assessment will inform the educational content and design of our e-health platform.
Aim 2 : Design and develop the educational content for a mobile e-health platform informed by: modifiable variables in the SMART model, the existing literature on CHD knowledge gaps in adolescents, the needs assessment, adaptation of an existing mentorship program, and varying levels of HL and TR. A formative iterative process with adolescents of various HL and TR levels will be used to further develop the content and design of this mobile-based e-health application to enhance adolescent transition.
Aim 3 : Conduct a pilot study of the mobile-based platform to assess feasibility, adolescent recruitment and engagement, and facilitate the transition and transfer process. Improving transition and transfer are critical to successful long-term disease management and survival.
The proposed research is relevant to public health because it addresses the needs of Americans who are surviving and living with congenital heart disease (CHD). This research plan is unique, timely, and of high public health significance as it applies mobile technologies to streamline transition and transfer of care for adolescents with CHD or other chronic diseases. Furthermore, it provides a strategy to reduce disparities in minority CHD populations and low health literacy families.