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

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.

Lost in the system? Transfer to adult congenital heart disease care—Challenges and solutions

“…The patients who transferred from pediatrics to ACHD care did so by age 21 years, but the average time revealed an average gap in care of almost 3 years. In the current study, those with severe CHD severity were more likely to stay in CHD care (Tables and ), and this finding is consistent with current literature . Although severity of disease was a protective factor, most patients with severe disease (81%) still did not transfer to ACHD care during the study time frame.…”

“…Patients graduating from the pediatric system and their families may find it difficult to navigate the health care system with these barriers. Transferring from one health care system to another can lead to an increase in structural and institutional barriers for successful transfer of care …”

“…In the United States, successful ACHD programs have been built at both pediatric and adult institutions. Different ACHD care settings may have specific barriers to transfer of care for their ACHD population . The current study evaluates interinstitutional transfer between a separate pediatric and adult hospital system that, since 2004, has made a concerted effort to transfer care of all soon‐to‐be ACHD patients into the adult system .…”

“…Different ACHD care settings may have specific barriers to transfer of care for their ACHD population. 13 The current study evaluates interinstitutional transfer between a separate pediatric and adult hospital system that, since 2004, has made a concerted effort to transfer care of all soon-to-be ACHD patients into the adult system. 14 The aim of this study is to identify factors associated with transfer from pediatric cardiology to adult congenital cardiology.…”

Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

“…Three articles gave best practices and guidelines in transition specific to CHD. [13,39,40] Transition best practices included timing of transition, establishing a medical home, long-term medical and surgical follow-up, anticipatory guidance, exercise restrictions, and family planning, and insurance preparation. Information on transition related topics, best practice in transition goals, and attitudes/existing transition programs were then considered for incorporation into our mobile application.…”