2021 Volume 53 Issue 1 Pages 21-27
Objective: To promote a smooth transition from pediatric to adult care for patients with childhood-onset dystrophinopathies, the statuses of transition and collaboration with community-based pediatric facilities among specialized hospitals for neuromuscular diseases were examined. Methods: A mail questionnaire survey was conducted for 29 hospitals, specializing in neuromuscular diseases. Results: Responses were obtained from 24 hospitals, only half of which performed smooth transition pediatric to adult care. 19 of the 24 hospitals replied that smooth transitions were not performed, which suggested existence of difficulties in department-transitions of medical care for childhood-onset dystrophinopathies, with several challenges including the establishment of favorable relationships with patients/families, sufficient information transmission, and determination of appropriate timings for transition. Seven hospitals adopted various approaches to address these issues. The specialized hospitals considered the pediatric services provided by community-based pediatric facilities as problematic in informing the pathophysiology, the condition, and the genetic information to the patients, and in the approach for rehabilitation. As for collaboration with these facilities, many hospitals answered “In addition to community-based pediatric facilities, we, specialized hospitals, also follow the patients”, while defining their role as “providing specialized advice and information”. Conclusions: Patients with childhood-onset dystrophinopathy were followed-up at the local pediatrics during the childhood, but at the specialty hospital after adulthood. Several challenges related to transitions of medical care for patients with childhood-onset dystrophinopathies were identified, but early collaboration between specialized hospitals and pediatric facilities may facilitate the provision of comprehensive care required by these patients during childhood, as well as a smooth transition from pediatric to adult care.
