Position Statement for the Development of Adult Congenital Heart Disease Units in Latin America and the Caribbean: Recommendations by the Adult Congenital Heart Disease Chapter and Pediatric Cardiology Council of the Interamerican Society Of...

Overview

Journal Int J Cardiol Congenit Heart Dis

Date 2024 Dec 23

PMID 39712233

Authors

John J Araujo

Carla P Rodriguez-Monserrate

Amalia Elizari

Lucelli Yanez-Gutierrez

Mariela Mouratian

Fernando Amaral

Manuel Huertas-Quinonez

Monica Rosario

Mauricio OConnell

Oscar N Aguirre-Zurita

Carlos Fernandez

Marcelo Callau-Briceno

Maria M Lorente-Coppola

Nancy Garay

Affiliations

Soon will be listed here.

Abstract

In 2020, there was an estimated prevalence of more than 1.8 million adults with congenital heart disease (ACHDs) living in South America, and 677,000 in Central America and the Caribbean. The ACHD mortality is higher in developing countries, compared with developed countries, and it has been shown that concentrating this population in specialized ACHD units improves their survival and prognosis. Currently, Latin American (LATAM) and Caribbean countries have an insufficient number of specialists and specialized ACHD units. Analyzing this situation, the Inter-American Society of Cardiology's (IASC) ACHD chapter and Pediatric Cardiology Council have prepared the first recommendations for developing ACHD units in LATAM and Caribbean countries. This article is the first collaborative work between South American, Central American and Caribbean countries. It describes the main points for organizing and developing ACHD units adapted to our own reality. Each point has been discussed in terms of barriers and challenges, followed by specific recommendations for improving and developing ACHD care. They have been reviewed and endorsed by the International Society for Adult Congenital Heart Disease (ISACHD), and the goal of their implementation is for each ACHD unit in the region to have the standards of quality and efficiency to improve the prognosis and survival of ACHDs in the region.

References

Moons P, Bratt E, De Backer J, Goossens E, Hornung T, Tutarel O . Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital.... Eur Heart J. 2021; 42(41):4213-4223. PMC: 8560210. DOI: 10.1093/eurheartj/ehab388. View

Rychik J, Atz A, Celermajer D, Deal B, Gatzoulis M, Gewillig M . Evaluation and Management of the Child and Adult With Fontan Circulation: A Scientific Statement From the American Heart Association. Circulation. 2019; 140(6):e234-e284. DOI: 10.1161/CIR.0000000000000696. View

Stout K, Daniels C, Aboulhosn J, Bozkurt B, Broberg C, Colman J . 2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. J Am Coll Cardiol. 2018; 73(12):e81-e192. DOI: 10.1016/j.jacc.2018.08.1029. View

Uzark K, Yu S, Lowery R, Afton K, Yetman A, Cramer J . Transition Readiness in Teens and Young Adults with Congenital Heart Disease: Can We Make a Difference?. J Pediatr. 2020; 221:201-206.e1. DOI: 10.1016/j.jpeds.2020.02.040. View

Webb G, Williams R . Care of the adult with congenital heart disease: introduction. J Am Coll Cardiol. 2001; 37(5):1166. DOI: 10.1016/s0735-1097(01)01280-3. View

Calderon-Colmenero J . La regionalización de la atención de cardiopatías congénitas: una meta pendiente. Arch Cardiol Mex. 2019; 89(2):150-159. DOI: 10.24875/ACM.M19000031. View

van der Bom T, Bouma B, Meijboom F, Zwinderman A, Mulder B . The prevalence of adult congenital heart disease, results from a systematic review and evidence based calculation. Am Heart J. 2012; 164(4):568-75. DOI: 10.1016/j.ahj.2012.07.023. View

Araiza-Garaygordobil D, Garcia-Martinez C, Burgos L, Saldarriaga C, Liblik K, Mendoza I . Dengue and the heart. Cardiovasc J Afr. 2021; 32(5):276-283. PMC: 8756038. DOI: 10.5830/CVJA-2021-033. View

Warnes C, Liberthson R, Danielson G, Dore A, Harris L, Hoffman J . Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001; 37(5):1170-5. DOI: 10.1016/s0735-1097(01)01272-4. View

10.

Gupta S, Gazendam N, Farina J, Saldarriaga C, Mendoza I, Lopez-Santi R . Malaria and the Heart: JACC State-of-the-Art Review. J Am Coll Cardiol. 2021; 77(8):1110-1121. DOI: 10.1016/j.jacc.2020.12.042. View

11.

Amaral F, Manso P, Schmidt A, Sgarbieri R, Vicente W, Carbone Junior C . Recommendations for starting a grown up congenital heart disease (GUCH) unit. Rev Bras Cir Cardiovasc. 2015; 30(3):373-9. PMC: 4541785. DOI: 10.5935/1678-9741.20150037. View

12.

. Global, regional, and national burden of congenital heart disease, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet Child Adolesc Health. 2020; 4(3):185-200. PMC: 7645774. DOI: 10.1016/S2352-4642(19)30402-X. View

13.

Kempny A, Fernandez-Jimenez R, Tutarel O, Dimopoulos K, Uebing A, Shiina Y . Meeting the challenge: the evolving global landscape of adult congenital heart disease. Int J Cardiol. 2013; 168(6):5182-9. DOI: 10.1016/j.ijcard.2013.07.198. View

14.

Moons P, Skogby S, Bratt E, Zuhlke L, Marelli A, Goossens E . Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis. J Am Heart Assoc. 2021; 10(6):e019552. PMC: 8174191. DOI: 10.1161/JAHA.120.019552. View

15.

Stout K, Daniels C, Aboulhosn J, Bozkurt B, Broberg C, Colman J . 2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease: Executive Summary: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation. 2018; 139(14):e637-e697. DOI: 10.1161/CIR.0000000000000602. View

16.

Cantu-Brito C, Chiquete E, Ruiz-Sandoval J, Gaxiola E, Albuquerque D, Corbalan R . Atherothrombotic disease, traditional risk factors, and 4-year mortality in a Latin American population: the REACH Registry. Clin Cardiol. 2012; 35(8):451-7. PMC: 6652684. DOI: 10.1002/clc.22005. View

17.

Baumgartner H, Budts W, Chessa M, Deanfield J, Eicken A, Holm J . Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of 'Grown-up Congenital Heart Disease' in Europe: a position paper of the Working Group on Grown-up Congenital Heart Disease of.... Eur Heart J. 2014; 35(11):686-90. DOI: 10.1093/eurheartj/eht572. View

18.

Liu Y, Chen S, Zuhlke L, Black G, Choy M, Li N . Global birth prevalence of congenital heart defects 1970-2017: updated systematic review and meta-analysis of 260 studies. Int J Epidemiol. 2019; 48(2):455-463. PMC: 6469300. DOI: 10.1093/ije/dyz009. View

19.

Uzark K, Smith C, Donohue J, Yu S, Afton K, Norris M . Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease. J Pediatr. 2015; 167(6):1233-8. DOI: 10.1016/j.jpeds.2015.07.043. View

20.

Sable C, Foster E, Uzark K, Bjornsen K, Canobbio M, Connolly H . Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011; 123(13):1454-85. DOI: 10.1161/CIR.0b013e3182107c56. View