Facilities for Patient Care

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.