Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe.
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.
Hilderson
Deborah
D
Center for Health Services and Nursing Research, Catholic University of Leuven, Kapucijnenvoer 35, Box 7001, Leuven 3000, Belgium.
Saidi
Arwa S
AS
Van Deyk
Kristien
K
Verstappen
Amy
A
Kovacs
Adrienne H
AH
Fernandes
Susan M
SM
Canobbio
Mary M
MM
Fleck
Desiree
D
Meadows
Alison
A
Linstead
Rachel
R
Moons
Philip
P
D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D002648:Child; D003266:Continuity of Patient Care; D005060:Europe; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D010360:Patient Transfer / Q000706:statistics & numerical data*; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D014481:United States