Ethical Challenges at the Frontiers of Medical Care for Children with Congenital Heart Disease in the U.S
Author:
Publisher
Springer Science and Business Media LLC
Subject
Pediatrics, Perinatology and Child Health
Link
https://link.springer.com/content/pdf/10.1007/s40746-023-00275-0.pdf
Reference23 articles.
1. Chowdhury D, Johnson JN, Baker-Smith CM, Jaquiss RDB, Mahendran AK, Curren V, Bhat A, Patel A, Marshall AC, Fuller S, Marino BS, Fink CM, Lopez KN, Frank LH, Ather M, Torentinos N, Kranz O, Thorne 1V, Davies RR, Berger S, Snyder C, Saidi A, Shaffer K. Health care policy and Congenital heart disease: 2020 focus on our 2030 future. J Am Heart Assoc 2021:10(20):e020605. https://doi.org/10.1161/JAHA.120.020605. This consensus statement identifies public health barriers to optimum patient outcomes in the care of children with congenital heart disease. The article highlights challenges for patient populations, healthcare delivery, and the healthcare workforce and makes recommendations for policy and advocacy efforts to address these barriers.
2. Lopez KN, Baker-Smith C, Flores G, Gurvitz M, Karamlou T, Nunez Gallegos F, Pasquali S, Patel A, Peterson JK, Salemi JL, Yancy C, Peyvandi S. American Heart Association Congenital Cardiac Defects Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young; Council on Epidemiology and Prevention; and Council on Lifestyle and Cardiometabolic Health. Addressing social determinants of health and mitigating health disparities across the lifespan in congenital heart disease: a scientific statement from the American Heart Association. J Am Heart Assoc. 2022;11(8):e025358. https://doi.org/10.1161/JAHA.122.025358. This AHA scientific statement outlines current disparities in outcomes for children with congenital heart disease and identifies a multitude of systemic factors that contribute to healthcare inequities. The article proposes strategies for reducing disparities as well as future research needs.
3. Karamlou T, Hawke JL, Zafar F, Kafle M, Tweddell JS, Najm HK, Frebis JR, Bryant JG. Widening our focus: characterizing socioeconomic and racial disparities in congenital heart disease. Ann thorac surg. 2022;113(1):157–65. https://doi.org/10.1016/j.athoracsur.2021.04.008. This study examines disparities in outcomes of children with congenital heart disease (CHD) based on socioeconomic and racial (SER) differences by querying the Pediatric Health Information System (PHIS) database. More than 166,000 admissions for CHD from 52 hospitals were identified and outcome disparities were identified based on SER differences, particularly for children with complex CHD.
4. Delany DR, Gaydos SS, Romeo DA, Henderson HT, Fogg KL, McKeta AS, Kavarana MN, Costello JM. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis. 2021;5(1):7. https://doi.org/10.1186/s40949-021-00061-3.
5. Godown J, Fountain D, Bansal N, Ameduri R, Anderson S, Beasley G, Burstein D, Knecht K, Molina K, Pye S, Richmond M, Spinner JA, Watanabe J, West S, Reinhardt Z, Scheel J, Urschel S, Villa C, Hollander SA. Heart transplantation in children with down syndrome. J Am Heart Assoc. 2022;11(10):e024883. https://doi.org/10.1161/JAHA.121.024883. This retrospective case series investigates outcomes of children with trisomy 21 who received heart transplants between 1992 and 2020. Waitlist and transplant outcomes were found to be comparable to the general population of children receiving heart transplant. The authors suggest that trisomy 21 alone should not be considered an absolute contraindication to pediatric heart transplant.
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