TY - JOUR
T1 - A survey on transition from pediatric to adult care for patients with Wilson disease
AU - Okayama, Kazuyo
AU - Kodama, Hiroko
AU - Aoki, Tsugutoshi
AU - Seo, Joo Hyun
AU - Okuyama, Torayuki
AU - Ikeda, Shu Ichi
AU - Tamai, Hiroshi
AU - Fujisawa, Tomoo
AU - Matsuura, Akihiro
AU - Shimizu, Norikazu
AU - Hayashi, Hisao
AU - Harada, Masaru
AU - Michitaka, Kojiro
N1 - Publisher Copyright:
© 2020 The Japan Society of Hepatology.
PY - 2020
Y1 - 2020
N2 - 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.
AB - 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.
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U2 - 10.2957/kanzo.61.700
DO - 10.2957/kanzo.61.700
M3 - Article
AN - SCOPUS:85097383194
VL - 61
SP - 700
EP - 714
JO - Acta Hepatologica Japonica
JF - Acta Hepatologica Japonica
SN - 0451-4203
IS - 12
ER -