Attitude Toward and Current Practice of Transfer and Transition of Adolescents with Congenital Heart Disease in the United States of America and Europe

Abstract

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.

Challenges Caring for Adults With Congenital Heart Disease in Pediatric Settings: How Nurses Can Aid in the Transition

“…27 The program should ensure that young adults understand their diagnosis and medical history and are able to recognize important and concerning signs and symptoms. 34 In a study by Van Deyk et al, 27 only 21% of adolescents could define endocarditis and only 1 patient could decipher the signs and symptoms of endocarditis. The transitioning adolescents should have a good understanding of the rationale for previous interventions and options for future medical, surgical, and catheterization laboratory therapies.…”

“…Once a child reaches the age of maturity with the ability to understand his or her disease, beginning the education process for transition should become a priority for the entire health care team. 27,34 If a patient has deficits in cognitive functioning, a surrogate should be appointed. 1 The Americans With Disabilities Act amendment of 1997 requires transition teaching to start at the age of 14 as part of yearly education, as well as provision of guidance at each clinic appointment at a developmentally appropriate level.…”

“…15 Few cardiology programs throughout the United States and Europe have structured programs to prepare patients for transition. 34 Structured education should include counseling on topics such as sexuality, contraception, reproductive issues, and risks of smoking and alcohol use. 23 Information should also be provided about their medications, including the need for the medications, their desired effect, when and how to take them, and adverse effects, leading to improved levels of health knowledge.…”

“…23 Finally, patients must be taught to navigate the adult health care system: how to access an adult CHD specialist, how often they need to follow up, how to access routine health care and emergency health care, and how to navigate the insurance system. 8,34 Family Support During the Transition…”

Development and evaluation of a computer-based educational program for adults with congenitally malformed hearts

“…If so, the program has the potential to be a very useful complement to verbally given information, not only to adults but also to adolescents with congenitally malformed hearts. This is especially important as strategies to prepare the adolescents for adulthood in order to prevent the loss of follow-up are lacking [49][50][51].…”