TY - JOUR
T1 - Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG
AU - Andrews, Jennifer G.
AU - Strah, Danielle
AU - Downing, Karrie F.
AU - Kern, Matthew C.
AU - Oster, Matthew E.
AU - Seckeler, Michael D.
AU - Goudie, Anthony
AU - Nembhard, Wendy N.
AU - Farr, Sherry L.
AU - Klewer, Scott E.
N1 - Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/6/15
Y1 - 2023/6/15
N2 - 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.
AB - 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.
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U2 - 10.1016/j.amjcard.2023.04.004
DO - 10.1016/j.amjcard.2023.04.004
M3 - Article
C2 - 37148718
AN - SCOPUS:85154035099
SN - 0002-9149
VL - 197
SP - 42
EP - 45
JO - American Journal of Cardiology
JF - American Journal of Cardiology
ER -