ESPE Abstracts (2019) 92 P1-243

A Nation-Wide Questionnaire Survey Targeting Japanese Pediatric Endocrinologists Regarding Transitional Care in Pediatric and Adolescent Cancer Patients

Yoko Miyoshi1,2, Tohru Yorifuji2, Susumu Yokoya2, Keisuke Nagasaki2, Masanobu Kawai2, Hiroyuki Ishiguro2, Satoshi Okada2, Junko Kanno2, Noriyuki Takubo2, Koji Muroya2, Junko Ito2, Reiko Horikawa2, Chikako Shimizu3, Keiichi Ozono1


1Department of Pediatrics, Osaka University Graduate School of Medicine, Suita, Japan. 2Childhood Cancer Survivor Committee of the Japanese Society for Pediatric Endocrinology, Tokyo, Japan. 3Department of Breast Medical Oncology, National Center for Global Health and Medicine, Tokyo, Japan


Background: While existing guidelines recommend long-term follow-up of childhood cancer survivors (CCS), transitional care among pediatric and adult endocrinologists has not been established in Japan.

Objective and Hypotheses: To know the present situation and to cultivate a better understanding, we had conducted a nation-wide survey targeting Japanese pediatric endocrinologists.

Method: We had conducted the questionnaire survey regarding transitional care in pediatric and adolescent cancer patients. The survey was sent to 183 Japanese Society for Pediatric Endocrinology (JSPE)-certified councilors (137 institutions) who were asked to self-evaluate their medical examinations and report problems in their follow-up. If multiple councilors belonged to the institution, one representative could present their voice. This work was supported by a Grant-in-Aid for Scientific Research (Japan Society for the Promotion of Science), and was in collaboration with the CCS committee of the JSPE and Research for Promotion of Cancer Control Program (Ministry of Health, Labour and Welfare).

Results: A total of 131 responses (male 102, female 29), representative of 174 councilors, were obtained. The response rate was 95% (174/183) per councilor. Ninety-two percent of respondent had experience in medical care for pediatric and adolescent cancer patients. Sixty-three percent had experiences in their transitional care. However, the number of patients referred to adult clinicians was minimum. Eighty-nine percent of respondents agreed the existence of adult endocrinologists who could accept follow-up of these patients in their region, but sixty-eight percent felt shortage. Pediatric endocrinologists highlighted difficulties in medical examinations dealing with infertility (84), obesity (47), pregnancy/delivery (40), gonadal dysfunction (40), and second cancer (35). The main burdens facing physicians were staff shortage, lack of clarity of their task, insufficiency of knowledge, patient-doctor relationship, and insufficient medical information. The main burdens to patients were supposedly multiple-field physical problems, financial and time burdens, infertility, unawareness of their health-related problems, and lack of recognition of the importance of long-term follow-up. Sixty-six percent wrote their comments, which include poor collaboration between endocrinologists and oncologists, shortage of information about cancer treatment, difficulty in approach method, lack of economical support, and regional differences. List of the main necessities was as follows: education program for physicians, collaboration between healthcare providers, training coordinators, information sharing, financial support system, social support in education and employment.

Conclusion: In this nationwide questionnaire survey, Japanese pediatric endocrinologists mentioned the necessity for inter-disciplinary communication amongst healthcare providers and socio-economical support to pediatric and adolescent cancer patients.