Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York

Laura M. Gaydos, Kristin Sommerhalter, Cheryl Raskind-Hood, Olushola Fapo, George Lui, Daphne Hsu, Alissa Van Zutphen, Jill Glidewell, Sherry Farr, Fred H. Rodriguez, Trenton Hoffman, Wendy Book

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
JournalPediatric Cardiology
DOIs
StateAccepted/In press - 2020

Keywords

  • CHD
  • Cardiology
  • Congenital
  • Heart defects
  • Transition

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

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    Gaydos, L. M., Sommerhalter, K., Raskind-Hood, C., Fapo, O., Lui, G., Hsu, D., Van Zutphen, A., Glidewell, J., Farr, S., Rodriguez, F. H., Hoffman, T., & Book, W. (Accepted/In press). Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York. Pediatric Cardiology. https://doi.org/10.1007/s00246-020-02378-z