Open Access

ARTICLE

Preparing adolescents with heart problems for transition to adult care, 2009–2010 National Survey of Children with Special Health Care Needs

by

1 National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia
2 Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee
3 Children’s Healthcare of Atlanta, Sibley Heart Center, Atlanta, Georgia

* Corresponding Author: Karrie F. Downing, 4770 Buford Hwy, Mailstop E.86, Atlanta, GA 30341. Email: Funding information Internship/Research Participation Program

Congenital Heart Disease 2017, 12(4), 497-506. https://doi.org/10.1111/chd.12476

Abstract

Objective: A substantial percentage of children with congenital heart disease (CHD) fail to transfer to adult care, resulting in increased risk of morbidity and mortality. Transition planning discussions with a provider may increase rates of transfer, yet little is known about frequency and content of these discussions. We assessed prevalence and predictors of transition-related discussions between providers and parents of children with special healthcare needs (CSHCN) and heart problems, including CHD.
Design: Using parent-reported data on 12- to 17-year-olds from the 2009–2010 National Survey of CSHCN, we calculated adjusted prevalence ratios (aPR) for associations between demographic factors and provider discussions on shift to adult care, future insurance, and adult healthcare needs, weighted to generate population-based estimates.
Results: Of the 5.3% of adolescents with heart problems in our sample (n 5 724), 52.8% were female, 65.3% white, 62.2% privately insured, and 37.1% had medical homes. Less than 50% had parents who discussed with providers their child’s future health insurance (26.4%), shift to adult care (22.9%), and adult healthcare needs (49.0%). Transition planning did not differ between children with and without heart problems (aPR range: 1.0–1.1). Among parents of CSHCN with heart problems who did not have discussions, up to 66% desired one. Compared to 1-/13-year-olds, a larger percentage of 16-/17-year-olds had parents who discussed their shift to adult care (aPR 2.1, 95% confidence interval (CI) [1.1, 3.9]), and future insurance (aPR 1.8, 95% CI [1.1, 2.9]). Having a medical home was associated with discussing adult healthcare needs (aPR 1.5, 95% CI [1.2, 1.8]) and future insurance (aPR 1.8, 95% CI [1.3, 2.6]).
Conclusions: Nationally, less than half of adolescents with heart problems had parents who discussed their child’s transition with providers, which could be contributing to the large percentage of CHD patients who do not successfully transfer to adult care.

---

Keywords

---