Abstract
The central role in a care delivery system for adult congenital heart disease (ACHD) should be performed by specialized ACHD centers. They should be well-staffed and equipped high volume centers, both for outpatient and inpatient care. The population that each specialized ACHD center should cover is assumed to be from 2 to 10 million. They will also provide education and training for the ACHD specialist and promote research and innovation. Methods for linking the roles of specialized ACHD centers and related facilities differ depending on the regional medical care system and medical resources, and appropriate methods should be found to suit each region. It is essential to clarify the preferences of the patients themselves in terms of treatment systems, giving due consideration to geographical access to medical institutions; it is also important for medical personnel to support such actions, with the expectation of political action by patient associations. Patients with ACHD may be examined in parallel by both distant specialized ACHD centers and a local nonspecialized facility, which complicates the monitoring of patient behavior. Therefore, it is essential to build a comprehensive database that incorporates specialized ACHD centers and nonspecialized facilities, as well as pediatric medical institutions such as children’s hospitals, to ascertain the behavior adopted by patients with ACHD, the medical services these patients are using, and the outcomes achieved by each facility. Even if appropriate medical facilities are established, they are meaningless unless the facilities are utilized by patients. Therefore, transition programs must be further developed in the future. At the same time as transition programs are developed for individuals and groups, research is needed to evaluate the effectiveness of these programs.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Therrien J, Dore A, Gersony W, Iserin L, Liberthson R, Meijboom F, et al. CCS Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I. Can J Cardiol. 2001;17:940–59.
Landzberg MJ, Murphy DJ Jr., Davidson WR Jr., Jarcho JA, Krumholz HM, Mayer JE Jr., et al. Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol. 2001;37:1187–93.
Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, et al. Management of grown up congenital heart disease. Eur Heart J. 2003;24:1035–84.
Marelli AJ, Therrien J, Mackie AS, Ionescu-Ittu R, Pilote L. Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines; an epidemiologic approach. Am Heart J. 2009;157:1–8.
Mylotte D, Pilote L, Ionescu-Ittu R, Abrahamowicz M, Khairy P, Therrien J, et al. Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation. 2014;129:1804–12.
Moons P, Engelfriet P, Kaemmerer H, Meijboom FJ, Oechslin E, Mulder BJ. Delivery of care for adult patients with congenital heart disease in Europe: results from the Euro Heart Survey. Eur Heart J. 2006;27:1324–30.
Baumgartner H, Budts W, Chessa M, Deanfield J, Eicken A, Holm J, et al. 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 the European Society of Cardiology. Eur Heart J. 2014;35:686–90.
Ochiai R, Kato H, Akiyama N, Ichida F, Yao A, Inuzuka R, et al. Nationwide survey of the transfer of adults with congenital heart disease from pediatric cardiology departments to adult congenital heart disease centers in Japan. Circ J. 2016;80:1242–50.
Toyoda T, Tateno S, Kawasoe Y, Shirai T, Shiina Y, Matsuo K, et al. Nationwide survey of care facilities for adults with congenital heart disease in Japan. Circ J. 2009;73:1147–50.
Welke KF, O’Brien SM, Peterson ED, Ungerleider RM, Jacobs ML, Jacobs JP. The complex relationship between pediatric cardiac surgical case volumes and mortality rates in a national clinical database. J Thorac Cardiovasc Surg. 2009;137:1133–40.
Karamlou T, Diggs BS, Person T, Ungerleider RM, Welke KF. National practice patterns for management of adult congenital heart disease: operation by pediatric heart surgeons decreases in-hospital death. Circulation. 2008;118:2345–52.
Baumgartner H, Bonhoeffer P, De Groot NM, de Haan F, Deanfield JE, Galie N, et al. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010): The Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC). Eur Heart J. 2010;31(23):2915–57.
New subspecialty ensures access to care for adult congenital heart disease patients. 2012. http://www.abim.org/certification/policies/internal-medicine-subspecialty-policies/adult-congenital-heart-disease.aspx. Accessed 15 May 2016.
Ochiai R, Yao A, Nagai R, Niwa K, Shiraishi I. Adult congenital heart disease care in cardiovascular departments. J Adult Congen Heart Dis. 2014;3:25–34.
American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–6.
Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113:197–205.
Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, et al. ACC/AHA 2008 Guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration with the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J Am Coll Cardiol. 2008;52:e1–121.
Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, et al. 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;123:1454–85.
Adult Congenital Heart Association Personal Health Passport. http://www.achaheart.org/library-education-materials/premium-print-materials/prodid/2.aspx. Accessed 1 May 2016.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2017 Springer Nature Singapore Pte Ltd.
About this chapter
Cite this chapter
Ochiai, R., Yao, A. (2017). Facilities for Patient Care. In: Masuda, M., Niwa, K. (eds) Adult Congenital Heart Disease. Springer, Singapore. https://doi.org/10.1007/978-981-10-4542-4_2
Download citation
DOI: https://doi.org/10.1007/978-981-10-4542-4_2
Published:
Publisher Name: Springer, Singapore
Print ISBN: 978-981-10-4541-7
Online ISBN: 978-981-10-4542-4
eBook Packages: MedicineMedicine (R0)