A survey on transition from pediatric to adult care for patients with Wilson disease

We performed a survey of 109 patients with Wilson disease (male 57, female 52; mean age, 34 years [range, 8-67]; mean age of diagnosis, 12 years [range, 2-50]). Among these, 73 and 59 patients were diagnosed and currently seen by pediatricians, respectively, and 10 and 29 were diagnosed and currently seen by gastroenterologists, respectively. These numbers suggest that the number of patients currently being treated by pediatricians has decreased, while those currently being treated by gastroenterologists has increased, as compared with a diagnostician. Thirty-four percent (28/82) of patients aged ≥15 years have transitioned from pediatric to adult care; 10 were dissatisfied with their current physicians for reasons such as not having sufficient knowledge about Wilson disease. Sixty-six percent (54/82) of patients were still treated by their pediatricians (mean age, 33 years). These results suggest that problems at transition include independence support to the patients, provision of disease information, and cooperation with Wilson disease-related organizations.