Transitional Care for Juvenile-onset Rheumatic and Musculoskeletal Diseases in Japan: A Web-based Survey of JCR and PRAJ Councillors/Board Members
Hidehiko Narazaki, Hiroaki Ida, Shuichi Ito, Hiroaki Umebayashi, Kayoko Kaneko, Yohei Kirino, Masaki Shimizu, Susumu Nishiyama, Toshihiro Matsui, Yuichi Mochida, Nobuyuki Yajima, Masaaki MoriAbstract
Objective
To describe transitional care for juvenile rheumatic and musculoskeletal disorders in Japan and identify barriers/facilitators to collaboration between departments and facilities.
Methods
We conducted a cross-sectional web-based survey in Japan (19 February–26 April 2025) targeting councillors/board members of the Japan College of Rheumatology and the Paediatric Rheumatology Association of Japan. Fisher’s exact tests and odds ratios were used for comparing adult and paediatric rheumatology services, and five major cities and others. Sparse cells were examined using Firth’s penalised logistic regression.
Results
Of 159 submitted questionnaires, 122 were valid. Over 70% managed transitioned patients in the past 3 years. Respondents perceived that transition-related activity had increased (34.9%), whereas barriers remained unchanged (68.6%). Among adult rheumatology declining transitioned patients, 83.3% reported ‘no referral received’. Awareness/ever utilised was 73.3%/24.4% for the Transition Support Guide and 45.3%/23.3% for MIRAI TALK, a patient-held transition communication/support tool for paediatric rheumatic diseases. Paediatrics showed higher awareness and ever utilisation of both tools than adult rheumatology. Preconception care awareness was high, with 68.9% implementation and with significantly less frequent male-targeted counselling in adult rheumatology. Awareness of transitional care support centres was limited (one-third) and lower in adult rheumatology.
Conclusion
Among surveyed rheumatology specialists, transition-related activity was perceived to have increased, but referral gaps, low adult-side tool uptake, and limited consultation pathways persist.