Open Access

REVIEW

Improving the quality of transition and transfer of care in young adults with congenital heart disease

Ian K. Everitt¹, Jennifer F. Gerardin², Fred H. Rodriguez^2,3, Wendy M. Book²

1 Emory University School of Medicine, Atlanta, Georgia, USA
2 Division of Cardiology, Department of Medicine, Emory University School of Medicine and Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
3 Sibley Heart Center Cardiology, Emory University School of Medicine, Atlanta, Georgia, USA

* Corresponding Author: Wendy M. Book, Director Emory Adult Congenital Heart Center, Emory University School of Medicine, 1365 Clifton Road NE, Clinic A, 2nd Floor, Cardiology Suite A2233, Atlanta, GA 30322, USA. Email:

Congenital Heart Disease 2017, 12(3), 242-25. https://doi.org/10.1111/chd.12463

Abstract

The transition and transfer from pediatric to adult care is becoming increasingly important as improvements in the diagnosis and management of congenital heart disease allow patients to live longer. Transition is a complex and continuous process that requires careful planning. Inadequate transition has adverse effects on patients, their families and healthcare delivery systems. Currently, significant gaps exist in patient care as adolescents transfer to adult care and there are little data to drive the informed management of transition and transfer of care in adolescent congenital heart disease patients. Appropriate congenital heart disease care has been shown to decrease mortality in the adult population. This paper reviews the transition and transfer of care processes and outlines current congenital heart disease specific guidelines in the United States and compares these recommendations to Canadian and European guidelines. It then reviews perceived and real barriers to successful transition and identifies predictors of success during transfer to adult congenital heart disease care. Lastly, it explores how disease-specific markers of outcomes and quality indicators are being utilized to guide transition and transfer of care in other chronic childhood illnesses, and identifies existing knowledge gaps and structural impediments to improving the management of transition and transfer among congenital heart disease patients.

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Keywords

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