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Multicenter Study
. 2017 Jul;12(4):497-506.
doi: 10.1111/chd.12476. Epub 2017 May 19.

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

Karrie F Downing  1   2 , Matthew E Oster  1   3 , Sherry L Farr  1
Affiliations
Multicenter Study

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

Karrie F Downing et al. Congenit Heart Dis. 2017 Jul.

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 = 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: Adolescent health services; cardiovascular disease; congenital heart defects; continuity of patient care; health services needs and demand; healthcare surveys.

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Conflict of interest statement

CONFLICTS OF INTERESTS

The authors have no conflicts of interest relevant to this article to disclose.

Figures

FIGURE 1
FIGURE 1
Prevalence of transition planning among children with special healthcare needs (CSCHN), ages 12–17 years, with heart problems compared to those without heart problems, National Survey for Children with Special Health Care Needs, United States, 2009–2010. The prevalence of four transition-planning components among CSCHN ages 12–17 years stratified by presence of a heart problem and the respective adjusted prevalence ratios comparing children with special healthcare needs with heart problems to those without heart problems
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