Background: The aim of this study was to determine preferences regarding transfer of patients with congenital heart disease (CHD) attending a children's hospital in Japan and related factors. Methods and Results: We conducted a self-administered questionnaire survey with CHD patients >15 years of age treated at the pediatric cardiology outpatient clinic of a children's hospital. Logistic regression analysis was used to identify factors related to patient preferences regarding the transfer. One hundred and eleven of the 122 patients given a questionnaire provided valid responses (valid response rate, 91.0%). Sixty-six subjects (64.9%) reported "not being told anything specific" by their physicians about the transfer from the children's hospital, and 72 (59.5%) stated that they "wished to continue attending the children's hospital". Visiting outpatient clinic with parents (OR, 11.00; 95% CI: 2.01-60.97), having low uncertainty about continuing to attend the children's hospital (OR, 0.95; 95% CI: 0.92-0.98), and having high uncertainty about leaving the current physician (OR, 1.04; 95% CI: 1.01-1.07) were significantly related to the patient's wish to continue to attend the children's hospital. Conclusions: There is a need to improve patient education regarding the opportunities for transfer, and to develop a systematic transition program for children's hospitals and aligned specialized adult CHD centers.

Because financial issues can adversely affect the psychological profiles of adult CHD patients, enhancement of social welfare and employment support may improve their social independence.

Purpose: (1) The purpose of this paper is to identify the relationship between social independence and psychological profiles in adult congenital heart disease patients with physically disabled patients certificate and (2) to identify patients difficulty, anxiety, and demands regarding social life. Method: A total of 143 patients with physically disabled patients certificates older than 15 years of age were selected for this study from data obtained by a questionnaire survey conducted by the patients association. In the questionnaire, each participant was asked about employment status, income, receipt status of disability pension as an index of social independence, and financial and psychological distress as an index of psychological status. Furthermore, each participant was asked to freely describe any difficulty, anxiety, and demands with regard to social life. Result: The ages of the subjects ranged from 15-73 years. Of the total, 71 patients (50%) were females, and 94 patients (66%) possessed the first grade physically disabled person s certificate. Fifty-nine patients (41%) were employed, and of the employed, the annual income of 34 patients (58%) was lower than two million Japanese yen per year. The frequency of hospital visits, low total household income, low individual income of the patient, dissatisfaction toward work, and receipt of the disability pension were related to the psychological profiles. In the free descriptions, the participants desired better pension systems, support for medical fees, and employment support systems. Conclusion: Financial issues can affect the patient s psychological profiles. It is a pressing need to enhance the social welfare and employment support systems.

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