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Title: Understanding age-based transition needs: Perspectives from adolescents and adults with congenital heart disease

item LOPEZ, KEILA - Baylor College Of Medicine
item KARLSTEN, MELISSA - Baylor College Of Medicine
item BONADUCE DE NIGRIS, FRANCESCA - Baylor College Of Medicine
item KING, JASON - Baylor College Of Medicine
item SALCICCIOLI, KATHERINE - Baylor College Of Medicine
item JIANG, ALICE - Rice University
item MARELLI, ARIANE - McGill University - Canada
item KOVACS, ADRIENNE - University Of Toronto
item FORDIS, MICHAEL - Baylor College Of Medicine
item Thompson, Deborah - Debbe

Submitted to: Congenital Heart Disease
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 5/24/2015
Publication Date: 12/1/2015
Citation: Lopez, K.N., Karlsten, M., Bonaduce De Nigris, F., King, J., Salciccioli, K., Jiang, A., Marelli, A., Kovacs, A.H., Fordis, M., Thompson, D.J. 2015. Understanding age-based transition needs: Perspectives from adolescents and adults with congenital heart disease. Congenital Heart Disease. 10(6):561-571.

Interpretive Summary: Children born with congenital heart disease need lifetime care, which is costly in terms of health care costs and clinician time. Successful transition from pediatric to adult care is essential for reducing lapses in health care. Qualitative research was conducted to address the perceived transition needs of adolescents. Results revealed that adolescents perceived a need for more information about managing emergencies and explaining their condition to a new doctor when transitioning. Adults said they would have liked more information about long-term health care issues. Adolescents felt that learning from adults with their heart condition in terms of information and emotional support would be helpful. Providing adolescents nearing transition with a checklist of things to do was perceived as helpful by both adolescents and adults. Although both groups thought speaking with their physician was the preferred way to learn about congenital heart disease and its effects on their life, the internet was seen as a potential resource. This study contributed important information regarding the perceived and actual needs of adolescent transition to adult care with moderate to severe congenital heart disease. Thus, it addresses an important gap in scientific understanding and contributes an understanding of how to develop successful programs and methods to facilitate successful transition.

Technical Abstract: The purpose of this study was to explore the transition process in congenital heart disease (CHD) care through the perceived needs and concerns of adolescents (pretransition) and the experiential insight from adults (post-transition), in order to inform future transition initiatives and information delivery methods. In this cross-sectional study, adolescents and adults with moderate or complex CHD participated in semistructured telephone interviews. Interview transcripts were coded using NVivo qualitative data software. Our setting was a single large urban tertiary care CHD center. Patients in our study included adolescents (between 16 and 20 years of age) and adults (21-40 years of age) with moderate or complex CHD. Patients with global developmental delay or known chromosomal abnormalities were excluded. Twenty adolescents and 20 adults participated in the study; each interview allowed for participants to discuss issues relevant to them. Among adolescents, half wanted more CHD information and half were concerned about becoming adults with CHD. All adolescents had access to the Internet via a mobile phone, but only 55% had searched online for CHD information. Adolescents were interested in mentorship with other adolescents (90%) and adults (60%) with CHD either in person or via protected social media. Among adults, 55% were satisfied with the amount of information they had received as adolescents. Areas in which adults would have preferred additional information include longer-term implications of CHD, employment, insurance, family planning, and mental health. There are similarities and differences in the perceived transition needs of a diverse group of adolescents and adults with CHD. Both cohorts desire additional information during the transition process, including interest in use of a transition checklist to learn about managing their CHD. Adolescents are interested in interactions with other teens and adult mentors with CHD and are open to Internet-based interventions. Web-based initiatives could deliver CHD information and provide a platform for social media mentorship.