Toward Improving the Transition of Patients With Congenital Adrenal Hyperplasia From Pediatrics to Adult Healthcare in Japan

Abstract

The transition of patients with childhood-onset chronic diseases from pediatric to adult healthcare systems has recently received significant attention. Since 2013, the Japan Pediatric Society developed working groups to formulate guidelines for transition of patients with childhood-onset chronic diseases from pediatric to their disease specialty. Herein, we report on the activities of the Japan Society of Pediatric Endocrinology (JSPE) and the current status of transition medicine for 21-hydroxylase deficiency (21-OHD) in Japan. The JSPE proposed roadmaps and checklists for transition and prepared surveys on the current status of healthcare transition for childhood-onset endocrine diseases. In Japan, newborn screening for 21-OHD started in January 1989; however, there is no nationwide registry-based longitudinal cohort study on 21-OHD from birth to adult. The current status and the whole picture of healthcare and health problems in adult patients with 21-OHD remain unclear. Thus, we conducted a questionnaire survey on JSPE members to clarify the current status of healthcare transition of 21-OHD and discuss future perspectives for the healthcare transition of patients with 21-OHD in Japan.

Transition from Paediatric to Adult Care in CAH: 20 Years of Experience at a Tertiary Referral Center

“…Implementation of a successful transition in young patients with chronic diseases is crucial to decrease mortality, prevent disease related comorbidities and improve quality of life [7,8]. Studies have shown that up to 50 % of patients with CAH are lost to follow-up leaving paediatric endocrine care, coinciding with a peak of hospital admissions due to manifestation of adrenal crisis (AC) in the second decade of life [9][10][11][12].…”