[Perceived challenges and status of the transition of patients from specified pediatric chronic diseases to designated intractable diseases: A survey of local government officials].

Objective The transition of patients from specified pediatric chronic diseases (SPCD) to designated intractable diseases (DID) in Japan presents several challenges; however, few studies have addressed this issue. This study aimed to examine the status and challenges of the transition as perceived by local government officials and to compare transition rates between prefectures, with and without transitional care support centers (TCSCs).Methods A web-based survey was conducted between September 25 and October 20, 2023, targeting 1,772 public health offices, health centers, and welfare offices across Japan. Data from personnel responsible for SPCD and DID programs, including their professional backgrounds, involvement in the programs, awareness of TCSCs, and the estimated percentage of patients who were unable to transition to the DID system in FY2022, were collected. Officials were also questioned on their perceptions of the challenges faced by patients who could not transition, and the status of support systems. The transition rates were compared between prefectures, with and without TCSCs.Results A total of 1,026 responses were obtained (response rate: 58.0%). Among respondents, 18.9% were aware of TCSCs, while awareness in prefectures without TCSCs was notably lower at 12.4%. The estimated percentage of patients who did not transition to a DID was 53.0%. This was significantly higher in prefectures without TCSCs (54.8%) than in prefectures with TCSCs (49.7%) (t = 2.67, P = .008). The most frequently cited challenges included increased financial burden due to failure to transition (82.8%), difficulties in maintaining continuous care at adult medical institutions (71.5%), and insufficient support for autonomy and independence from medical, administrative, and educational systems (65.4%). These issues were recognized more frequently by medical professionals than by clerical staff.Conclusion This study suggests that approximately 50% of patients with SPCDs may be unable to transition to a DID program, with a higher failure rate observed in prefectures without TCSCs. The presence of TCSCs may facilitate a smoother transition. However, awareness of these centers remains limited, particularly in areas without them. Raising awareness and promoting the establishment of TCSCs may assist in improving support during the transition period.