Transition of Care in Congenital Heart Disease: Ensuring the Proper Handoff.

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.

Adult congenital heart disease nurse coordination: Essential skills and role in optimizing team-based care a position statement from the International Society for Adult Congenital Heart Disease (ISACHD).

BACKGROUND: Founded in 1992, the International Society for Adult Congenital Heart Disease (ISACHD) is the leading global organization of professionals dedicated to pursuing excellence in the care of adults with congenital heart disease (CHD) worldwide. Among ISACHD's objectives is to "promote a holistic team-based approach to the care of the adult with CHD that is comprehensive, patient-centered, and interdisciplinary" (http://www.isachd.org). This emphasis on team-based care reflects the fact that adults with CHD constitute a heterogeneous population with a wide spectrum of disease complexity, frequent association with other organ involvement, and varied co-morbidities and psychosocial issues. METHODS: Recognizing the vital role of the adult CHD (ACHD) nurse coordinator (ACHD-NC) in optimizing team-based care, ISACHD established a task force to elucidate and provide guidance on the roles and responsibilities of the ACHD-NC. Acknowledging that nursing roles can vary widely from region to region based on factors such as credentials, scopes of practice, regulations, and local culture and tradition, an international panel was assembled with experts from North America, Europe, East Asia, and Oceania. The writing committee was tasked with reviewing key aspects of the ACHD-NC's role in team-based ACHD care. RESULTS/CONCLUSION: The resulting ISACHD position statement addresses the ACHD-NC's role and skills required in organizing, coordinating, and facilitating the care of adults with CHD, holistic assessment of the ACHD patient, patient education and counseling, and support for self-care management and self-advocacy.