Angela Lee1, Barbara Bailey1, Geraldine Cullen-Dean2, Sandra Aiello3, Joanne Morin4, Erwin Oechslin5,6. 1. Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, 585 University Avenue, 5N-519, Toronto, ON, M5G 2N2, Canada. 2. Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada. 3. Labatt Family Health Centre, The Hospital for Sick Children, Toronto, ON, Canada. 4. University of Ottawa Heart Institute, Ottawa, ON, Canada. 5. Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, 585 University Avenue, 5N-519, Toronto, ON, M5G 2N2, Canada. erwin.oechslin@uhn.ca. 6. Labatt Family Health Centre, The Hospital for Sick Children, Toronto, ON, Canada. erwin.oechslin@uhn.ca.
Abstract
BACKGROUND: With great advances in medical and surgical care, most congenital heart disease patients are living in to adulthood and require lifelong surveillance and expert care for adult onset complications. Care lapse and lack of successful transfer from pediatric to adult care put young adults at risk for increased morbidity and premature death. Hence, transition and transfer from pediatric to adult care is a crucial and critical process to provide access to specialized care and lifelong surveillance. PURPOSE OF REVIEW: The aim of this article is to describe barriers to successful transition and transfer and to share practical strategies and concepts to overcome these barriers in order to successfully implement a transition program. RECENT FINDINGS: There are patient-specific, local, and institutional specific barriers to establish a successful transition program which involves many stakeholders. Collaboration of the Pediatric and Adult Congenital Heart Disease programs is paramount; the understanding of the benefit and the need of a structured transition program, dedication, and a proactive approach are essential. Youth- and family-centered education improves healthcare knowledge, self-management, self-advocacy, and appropriate interdependence and helps young adults to take ownership of their health. Nurses play an integral role within the multidisciplinary team in supporting seamless, successful transition and transfer of CHD patients from pediatric to adult care thereby reducing loss to follow-up and lapses in care. Most experiences and recommendations are based on retrospective studies and expert consensus. It is imperative to evaluate the impact of structured and planned transition/transfer programs on the outcomes. Hence, prospective, randomized trials are required to document if implementation of structured intervention transition programs improve knowledge, patient experiences, and outcomes of congenital heart defect survivors.
BACKGROUND: With great advances in medical and surgical care, most congenital heart diseasepatients are living in to adulthood and require lifelong surveillance and expert care for adult onset complications. Care lapse and lack of successful transfer from pediatric to adult care put young adults at risk for increased morbidity and premature death. Hence, transition and transfer from pediatric to adult care is a crucial and critical process to provide access to specialized care and lifelong surveillance. PURPOSE OF REVIEW: The aim of this article is to describe barriers to successful transition and transfer and to share practical strategies and concepts to overcome these barriers in order to successfully implement a transition program. RECENT FINDINGS: There are patient-specific, local, and institutional specific barriers to establish a successful transition program which involves many stakeholders. Collaboration of the Pediatric and Adult Congenital Heart Disease programs is paramount; the understanding of the benefit and the need of a structured transition program, dedication, and a proactive approach are essential. Youth- and family-centered education improves healthcare knowledge, self-management, self-advocacy, and appropriate interdependence and helps young adults to take ownership of their health. Nurses play an integral role within the multidisciplinary team in supporting seamless, successful transition and transfer of CHD patients from pediatric to adult care thereby reducing loss to follow-up and lapses in care. Most experiences and recommendations are based on retrospective studies and expert consensus. It is imperative to evaluate the impact of structured and planned transition/transfer programs on the outcomes. Hence, prospective, randomized trials are required to document if implementation of structured intervention transition programs improve knowledge, patient experiences, and outcomes of congenital heart defect survivors.
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