Adolescents with Congenital Heart Disease Transition Program: Self-Management Focus
Background: Healthy People 2020 set a goal of 45.3% for adolescents with special health care needs to participate in transition planning yet only 40% reported having done so. These patients have been in a pediatric health care environment that traditionally does not require them to self-manage their condition. This is demonstrated by a lack of knowledge by adolescents with CHD regarding the name and basic physiology of their heart defect, symptoms of deterioration of their condition, and risk factors for endocarditis. In addition, they lack the knowledge on how often they should have follow-up appointments, the indication for their medications as well as the consequences of non-compliance. Use of written material including a “health passport” is recommended and has been successfully used as an educational tool.
Methods: This project involves the integration of an educational session with adolescents with CHD who are being seen in an outpatient cardiology clinic. The foundation of the interaction is assessing the adolescent’s current knowledge and providing an interactive “health passport” designed by the Adult Congenital Heart Association. Elements of education focus on self-management and meet the guidelines set by the American Heart Association and American Academy of Pediatrics Consensus Statement. The knowledge scores of patients using the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) before and after the patient received purposeful education is used to evaluate the change in knowledge following the educational interaction. The EBPI San Diego Consortium Model – “The Eight A’s” assesses the problem, asks a question, acquires evidence, appraises the evidence, applies a practice change, analyzes the change, advances the results and adopts the new change is used for this project. This project is informed by Dorothea Orem’s Self-Care theory. Self-care practice with the patient making decisions for the benefit of their own health and health deviation self-care with patients that have illness or disease make decisions to manage their disease including recognition of deterioration and following prescribed treatment.
Outcomes: The outcomes of this project are currently pending. It is anticipated that the following objectives will be met: 1) 50% of identified eligible patients will participate in the transition program education. 2) 90% of participants will complete the LKQCHD pre and posttest. 3) 100% of the participants tested will score greater than 50% on the LKQCHD posttest.
Conclusions: Nurse Practitioners are uniquely qualified to implement a transition education program focused on adolescents with CHD. Advantages and challenges related to transition programs will be examined, with further implications for clinical practice identified and optimal time to begin transition education with this population. The process used for this project can be applied to other chronic health conditions to assist those adolescents in preparing to self-manage their specific health care condition.