ORIGINAL ARTICLE

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

Corresponding Author

Karrie F. Downing MPH

[email protected]

orcid.org/0000-0002-3063-1781

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee

Correspondence Karrie F. Downing, 4770 Buford Hwy, Mailstop E.86, Atlanta, GA 30341. Email: [email protected]Search for more papers by this author

Matthew E. Oster MD,

Matthew E. Oster MD

orcid.org/0000-0002-2243-8367

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

Children's Healthcare of Atlanta, Sibley Heart Center, Atlanta, Georgia

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Sherry L. Farr PhD,

Sherry L. Farr PhD

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

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Karrie F. Downing MPH,

Corresponding Author

Karrie F. Downing MPH

[email protected]

orcid.org/0000-0002-3063-1781

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee

Correspondence Karrie F. Downing, 4770 Buford Hwy, Mailstop E.86, Atlanta, GA 30341. Email: [email protected]Search for more papers by this author

Matthew E. Oster MD,

Matthew E. Oster MD

orcid.org/0000-0002-2243-8367

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

Children's Healthcare of Atlanta, Sibley Heart Center, Atlanta, Georgia

Search for more papers by this author

Sherry L. Farr PhD,

Sherry L. Farr PhD

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

Search for more papers by this author

First published: 19 May 2017

https://doi.org/10.1111/chd.12476

Citations: 11

Funding information: Internship/Research Participation Program

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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.

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Volume12, Issue4

July/August 2017

Pages 497-506

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

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

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