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Advance Care Directives Among a Population-Based Sample of Young Adults with Congenital Heart Defects, CH STRONG, 2016–2019

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Abstract

Little is known about advance care planning among young adults with congenital heart defects (CHD). Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG) participants were born with CHD between 1980 and 1997, identified using active, population-based birth defects surveillance systems in Arkansas, Arizona and Atlanta, and Georgia, and surveyed during 2016–2019. We estimated the percent having an advance care directive standardized to the site, year of birth, sex, maternal race, and CHD severity of the 9312 CH STRONG-eligible individuals. We calculated adjusted odds ratios (aOR) and 95% confidence intervals (CI) for characteristics associated with having advance care directives. Of 1541 respondents, 34.1% had severe CHD, 54.1% were female, and 69.6% were non-Hispanic white. After standardization, 7.3% had an advance care directive (range: 2.5% among non-Hispanic blacks to 17.4% among individuals with “poor” perceived health). Individuals with severe CHD (10.5%, aOR = 1.6, 95% CI: 1.1–2.3), with public insurance (13.1%, aOR = 1.7, 95% CI: 1.1–2.7), with non-cardiac congenital anomalies (11.1%, aOR = 1.9, 95% CI: 1.3–2.7), and who were hospitalized in the past year (13.3%, aOR = 1.8, 95% CI: 1.1–2.8) were more likely than their counterparts to have advance care directives. Individuals aged 19–24 years (6.6%, aOR = 0.4, 95% CI: 0.3–0.7) and 25–30 years (7.6%, aOR = 0.5, 95% CI: 0.3–0.8), compared to 31–38 years (14.3%), and non-Hispanic blacks (2.5%), compared to non-Hispanic whites (9.5%, aOR = 0.2, 95% CI: 0.1–0.6), were less likely to have advance care directives. Few young adults with CHD had advance care directives. Disparities in advance care planning may exist.

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Acknowledgements

The authors thank Kristine MaWhinney for replicating the analysis. CH STRONG was funded by the Centers for Disease Control and Prevention.

Funding

Funding for CH STRONG was provided by the Centers for Disease Control and Prevention.

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Authors and Affiliations

  1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 4770 Buford Highway, MS 106-3, Atlanta, GA, 30341, USA

    Sherry L. Farr, Karrie F. Downing & Matthew E. Oster

  2. Department of Pediatrics, Center for Applied Research and Evaluation, College of Medicine, Little Rock, AR, USA

    Anthony Goudie

  3. Department of Pediatrics, University of Arizona, Tucson, AZ, USA

    Scott E. Klewer & Jennifer G. Andrews

  4. Children’s Healthcare of Atlanta and Emory University School of Medicine, Atlanta, GA, USA

    Matthew E. Oster

Authors
  1. Sherry L. Farr
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  2. Karrie F. Downing
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  3. Anthony Goudie
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  4. Scott E. Klewer
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  5. Jennifer G. Andrews
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  6. Matthew E. Oster
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Contributions

All authors contributed to the study conception, design, and data collection. Data analysis was performed by Karrie Downing. The first draft of the manuscript was written by Sherry Farr and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Sherry L. Farr.

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Farr, S.L., Downing, K.F., Goudie, A. et al. Advance Care Directives Among a Population-Based Sample of Young Adults with Congenital Heart Defects, CH STRONG, 2016–2019. Pediatr Cardiol 42, 1775–1784 (2021). https://doi.org/10.1007/s00246-021-02663-5

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  • DOI: https://doi.org/10.1007/s00246-021-02663-5

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