Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG - PubMed (original) (raw)

Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG

Jennifer G Andrews et al. Am J Cardiol. 2023.

Abstract

Many of the estimated 1.4 million adults with congenital heart defects (CHDs) in the United States are lost to follow-up (LTF) despite recommendations for ongoing cardiology care. Using 2016 to 2019 CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) data, we describe cardiac care among community-based adults with CHD, born in 1980 to 1997, identified through state birth defects registries. Our estimates of LTF were standardized to the CH STRONG eligible population and likely more generalizable to adults with CHD than clinic-based data. Half of our sample were LTF and more than 45% had not received cardiology care in over 5 years. Of those who received care, only 1 in 3 saw an adult CHD physician at their last encounter. Not knowing they needed to see a cardiologist, being told they no longer needed cardiology care, and feeling "well" were the top reasons for LTF, and only half of respondents report doctors discussing the need for cardiac follow-up.

Copyright © 2023 Elsevier Inc. All rights reserved.

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Conflict of interest statement

Declaration of Competing Interest The authors have no conflicts of interest to declare.

Figures

Figure 1.

Figure 1.. Data shown represent

(A) time since last cardiology visit and (B) age at survey by type of cardiologist last seen for the 881 young adults with CHD who saw a cardiologist in past 5 years and (C) reasons why the remaining 659 young adults did not see a cardiologist by CHD severity, CH STRONG, 2016 to 2019. *p <0.05.

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