Open AccessHealth Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York
Author(s) -
Laura M. Gaydos,
Kristin Sommerhalter,
Cheryl RaskindHood,
Olushola Fapo,
George K. Lui,
Daphne T. Hsu,
Alissa Van Zutphen,
Jill Glidewell,
Sherry L. Farr,
Fred H. Rodriguez,
Trenton Hoffman,
Wendy Book
Publication year - 2020
Publication title -
pediatric cardiology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.646
H-Index - 71
eISSN - 1432-1971
pISSN - 0172-0643
DOI - 10.1007/s00246-020-02378-z
Subject(s) - medicine , specialty , cardiac surgery , health care , family medicine , young adult , perception , heart defect , gerontology , pediatrics , heart disease , psychology , surgery , neuroscience , economics , economic growth , cardiology
With increasing survival trends for children and adolescents with congenital heart defects (CHD), there is a growing need to focus on transition from pediatric to adult specialty cardiac care. To better understand parental perspectives on the transition process, a survey was distributed to 451 parents of adolescents with CHD who had recent contact with the healthcare system in Georgia (GA) and New York (NY). Among respondents, 90.7% reported excellent, very good or good health-related quality of life (HRQoL) for their adolescent. While the majority of parents (77.8%) had been told by a provider about their adolescent's need to transition to adult specialty cardiac care, most reported concerns about transitioning to adult care. Parents were most commonly concerned with replacing the strong relationship with pediatric providers (60.7%), locating an appropriate adult provider (48.7%), and accessing adult health insurance coverage (43.6%). These findings may offer insights into transition planning for adolescents with CHD.