Background: The importance of the transition from pediatric to adult healthcare has recently been recognized. In patients with steroid-sensitive nephrotic syndrome (SSNS), the shift in steroid dose during the transition period is a big problem. Thus, change in treatment methods during this transition need to be clarified.
Methods: Questionnaires were sent to all councilors of the Japanese Society for Pediatric Nephrology who managed SSNS in children. The questionnaires asked about steroid dose, informed consent, and transition programs. Councilors in 50 of 57 (87.7 %) institutes responded within 2 weeks.
Results: About one-third of pediatric nephrologists (PNs) did not transfer patients to adult units, and half of PNs followed patients after they reached adulthood (i.e., age >20 years). The dose of steroids after puberty varied between doctors, but 74 % of PNs provided short-term daily therapy. 72 % of PNs informed the patients of the shift in steroid dose, but 26 % of PNs did not. About two-thirds of PNs did not consult with adult nephrologists before the transition from pediatric to adult care. No institute had a transition program for SSNS and 2 institutes had transition coordinators.
Conclusion: Transition programs are needed in Japan. But the difference in the steroid regimen between pediatric and adult patients with SSNS is a barrier to transition. This difference needs to be discussed.