2018 Volume 50 Issue 5 Pages 342-349
Objective: For improvement of educational support for patients with Duchenne muscular dystrophy (DMD), we investigated the current state of school life for patients with Duchenne muscular dystrophy (DMD) and related issues. Methods: A multicenter questionnaire survey was given to parents of DMD patients aged 6 to 20 years who were receiving treatment at 7 hospitals in 5 prefectures in Japan. Results: Parents of a total of 115 patients with DMD returned completed questionnaires. Upon admission to elementary school, 60% of the patients were placed in a regular class, while 5% were enrolled in a special needs school. From the fourth year of elementary school, the number of patients who seemed to enjoy school showed a decreasing trend, while those who did not participate in physical education class showed an increasing trend. At around the fifth year, some required a change to a special needs class or special needs school. Upon admission into junior high school, 60% of the patients were enrolled in a special needs school, while 13% remained in a regular school. Concerning collaboration between physicians and school staff, 77% of the parents expected some level of collaboration, whereas 52% of them answered that there was no collaboration. Conclusions: A large number of DMD patients are placed in a regular class to begin elementary school, though difficulties with school life seem to appear from the fourth year. It is important to share information and adjust the educational environment as necessary in consideration of patient need, as well as consultations among parents, teachers, and attending physicians. The level of collaboration between physicians and school staff in regard to education is lower than expected by parents, thus an effective system for collaboration between the medical and educational fields should be constructed.
