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Implantation of Total Artificial Heart in Congenital Heart Disease
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Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG

Jennifer G Andrews1, Danielle Strah1, Karrie F Downing2

  • 1Department of Pediatrics, University of Arizona, Tucson, Arizona.

The American Journal of Cardiology
|May 6, 2023
PubMed

Insights

Many adults with congenital heart defects (CHDs) are lost to follow-up, with half not seeing a cardiologist in five years. Reasons include lack of awareness and perceived wellness, highlighting a gap in essential cardiac care.

Area of Science:

  • Cardiology
  • Public Health
  • Medical Outcomes

Background:

  • An estimated 1.4 million adults in the US have congenital heart defects (CHDs).
  • Many adults with CHDs are lost to follow-up (LTF) despite recommendations for ongoing cardiology care.
  • Community-based data on cardiac care for adults with CHDs are limited.

Purpose of the Study:

  • To describe cardiac care patterns among community-based adults with CHDs.
  • To estimate the rate of lost to follow-up (LTF) in this population.
  • To identify reasons for LTF and barriers to cardiology care.

Main Methods:

  • Utilized 2016-2019 CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) data.
  • Included adults with CHDs born between 1980-1997, identified via state birth defects registries.
  • Standardized LTF estimates to the eligible CH STRONG population for generalizability.

Main Results:

  • Half of the study sample were lost to follow-up (LTF).
  • Over 45% had not received cardiology care in over 5 years.
  • Among those receiving care, only 1 in 3 saw an adult CHD physician; top LTF reasons included lack of awareness, perceived wellness, and misinformation.

Conclusions:

  • A significant proportion of adults with CHDs are lost to follow-up and lack consistent cardiology care.
  • Barriers to care include patient-related factors and insufficient physician communication regarding lifelong follow-up needs.
  • Improved strategies are needed to ensure continuous cardiac care for the growing adult CHD population.

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