一项针对原发免疫性血小板减少症的医患调研：I-WISh国际调研中国亚组分析

OBJECTIVE: To explore the impact of primary immune thrombocytopenia（ITP）on patient's quality of life and emotional well-being, and both the physician and the patient's perception of the treatment. METHODS: This study was a Chinese Subgroup analysis of I-WISh survey, including 102 physicians and 286 ITP patients invited to complete the survey. A descriptive analysis of the results of the physician-patient survey was conducted in three parts: symptoms, impact of ITP on quality of life and emotion, and treatment perception. RESULTS: Fatigue and anxiety about unstable platelet counts were the main symptoms after treatment. Physicians reported inadequate frequency of anxiety and fatigue. In terms of quality of life, over 90.0％ of patients thought that ITP had a negative impact on their working life/studies, daily tasks, energy, capacity to exercise, and sexual life. With regard to emotion, 60.8％（174/286）patients thought that ITP had a greater impact on overall emotion，concerns about the fluctuation in platelet level（74.8％, 214/286）, disease itself（71.7％, 205/286）and disease progression（68.9％, 197/286）were the common issues, which were similar to the physicians' evaluations. Both physicians and patients agreed that reducing spontaneous bleeding, maintaining a healthy blood count and improving quality of life were the top three important treatment goals. Physicians considered reducing bleeding risk as the most important factor for decision making. Physicians believed that patients receiving glucocorticoid（54.9％, 56/102）were most likely to succeed in achieving sustained response while patients had the best response to thrombopoietin receptor agonist（TPO-RA）treatment, with about 83.9％（240/286）being satisfied with the overall effectiveness of TPO-RA. CONCLUSION: Physicians in the I-WISh Chinese subgroup had low awareness on patients' fatigue and anxiety. The quality of life and emotion of patients were significantly negatively affected by ITP. There are differences in the selection of treatments between physicians and patients, suggesting that physicians should raise concerns about the quality of life of ITP patients and make individualized treatment options through physician-patient shared decisions.