Nationwide Survey of the Transfer of Adults With Congenital Heart Disease From Pediatric Cardiology Departments to Adult Congenital Heart Disease Centers in Japan.

ABSTRACT

BACKGROUND: Current Japanese transfer practices for adult congenital heart disease (ACHD) patients in pediatric departments are elucidated in this study. The focus was on 149 facilities (from the Japanese Society of Pediatric Cardiology and Cardiac Surgery Subspecialty Board and the Japanese Association of Children's Hospitals and Related Institutions). One hundred and thirteen facilities were surveyed and the response rate was 75.8%. METHODS AND RESULTS: Twenty-six facilities (23.0%) treated ≥200 outpatients annually; 48 facilities (42.9%) treated <50 outpatients. Only eight facilities admitted ≥50 inpatients; 61 facilities (54.0%) admitted <10 inpatients. Nine facilities fulfilled international regional ACHD center criteria. The estimated median number of patients receiving outpatient pediatric department follow up was 33,806. Sixty facilities (53.6%) treated patients in pediatric departments after they reached adulthood. Of 49 facilities that transferred patients, the transfer was most commonly to another department in the same facility (20 facilities; 40.8%), typically the adult cardiology department (29 facilities; 59.2%). In future, 55 facilities (48.7%) desired the transfer of patients to regional ACHD centers, while 34 facilities (30.1%) preferred to continue treating patients in the pediatric department. CONCLUSIONS: The number of regional ACHD centers offering sufficient outpatient and inpatient care is limited; transfer from pediatric departments is not standard in Japan. Role division clarification between regional ACHD centers and other facilities and cooperative network establishment including transitional care programs is necessary. (Circ J 2016; 80 1242-1250).