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

• Authors: Laura Gaydos, Emory University; Kristin Sommerhalter, New York State Department of Health; Cheryl Raskind-Hood, Emory University; Olushola Fapo, New York State Dept Hlth; George Lui, Stanford School of Medicine; Daphne Hsu, Childrens Hosp Montefiore; Alissa Van Zutphen, New York State Department of Health; Jill Glidewell, Centers for Disease Control and Prevention, Atlanta; Sherry Farr, Centers for Disease Control and Prevention, Atlanta; Fred Rodriguez III, Emory University; Trenton Hoffman, Emory University; Wendy Book, Emory University
• Journal Title: PEDIATRIC CARDIOLOGY
• Volume: Volume 41, Number 6
• Publisher: SPRINGER | 2020-06-04, Pages 1220-1230
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1007/s00246-020-02378-z
• Subjects: Health Sciences, Public Health
• Keywords: Science & Technology; Life Sciences & Biomedicine; Cardiac & Cardiovascular Systems; Pediatrics; Cardiovascular System & Cardiology; Congenital; Transition; Heart defects; CHD; Cardiology; QUALITY-OF-LIFE; YOUNG-ADULTS; POSITION PAPER; DISEASE; CHILDREN; PREVALENCE; LOST; POPULATION; CHALLENGES; PATIENT

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.