Opinions of physicians regarding problems and tasks involved in the medical care system for patients with adult congenital heart disease in Japan.

BACKGROUND

The aim of this study is to summarize the opinions of physicians regarding problems and tasks involved in the medical care system for patients with adult congenital heart disease (ACHD) in Japan.

METHODS AND RESULTS

We conducted a semistructured interview with 30 subjects consisting of 13 pediatric cardiologists, 11 cardiovascular surgeons, and six cardiologists who were selected from among the randomly sampled medical facilities meeting each of the following institutional criteria: (1) facilities with ≥50 ACHD outpatients; (2) facilities with ACHD-specialized outpatient clinic; (3) facilities that are members of the Japanese Association of Chirdren's Hospitals and Related Facilities. The interview time was 27-91 minutes (mean, 70.0). The age of the subjects ranged from 36 to 62 years (mean, 46.7), and they had 0.5-34 years (mean, 16.2) of experience in treating congenital heart disease. From an analysis of interview details, the following four themes were extracted (in descending order of the number of comments): "(1) Who should treat ACHD" (comments by 29 subjects), "(2) Centralization of medical care" (comments by 29 subjects), "(3) What is the role of children's hospitals in ACHD?" (comments by 24 subjects), and "(4) Psychosocial problems" (comments by 24 subjects).

CONCLUSIONS

Regional ACHD centers need to be established to promote centralization of patients, physicians, and educational function. This will provide higher quality medical service to more patients in the near future.