Persistence with medical treatment for Wilson disease in China based on a single center’s survey research

BACKGROUND: Wilson's disease (WD) is one of the few hereditary diseases that can be successfully treated with medicines. We conduct this survey research to assess treatment persistence among patients with WD and try to identify what factors affect the treatment persistence. METHODS: We employed WeChat which is the most popular social software in China to carry out this anonymous questionnaire research. The questionnaire included medication adherence scale. We also collected available medical records related to demographic and clinical characteristics. All the patients were divided into group of persistence with drug treatment (PDT) and nonpersistence with drug treatment (n‐PDT). RESULTS: We collected 242 qualified questionnaires. Only 66.5% of patients were PDT during the mean 12.6 years of follow‐up. In PDT group, better outcomes were observed: improvement (78.3%) and no change (16.1%) versus those in n‐PDT (55.6%; and 28.4%, respectively). In PDT group, only nine patients deteriorated (6.8%) in comparison with 13 patients in n‐PDT (16.0%). The adverse events (AEs) in PDT group were significantly less than those in n‐PDT group. There were no significant differences in clinical type, gender, age, education level, and family knowledge about WD between the two groups. There were significant differences in AEs and family position toward treatment. CONCLUSION: Medication Adherence of Chinese WD patients was low. One third of the patients (33.5%) were unable to PDT, and it had an important negative effect on clinical outcome. AEs and family support had an important impact on treatment persistence.