Chang Cheng-Shyong, Chen Chieh-Wen, Chiang I-Ju, Ku Fan-Chen, Lee Yee-Ming, Siddiqui Asif
Chang Bing Show Chwan Memorial Hospital, Lukang, Taiwan.
Novartis (Taiwan) Co. Ltd, Taipei, Taiwan.
J Patient Exp. 2021 Nov 23;8:23743735211059053. doi: 10.1177/23743735211059053. eCollection 2021.
Patients with myeloproliferative neoplasm (MPN), including myelofibrosis, polycythemia vera, and essential thrombocythemia, experience a pronounced symptom burden. This study aimed to collect information from physicians and patients in Taiwan to explore their perceptions regarding MPN, treatment goals, and satisfaction with disease management. A cross-sectional, online survey was conducted among patients and physicians from September 2018 to November 2018 in Taiwan as a subset of the expansion of the Landmark survey. Overall, 50 patients with MPN and 30 physicians participated in this study. The symptom burden was low, with the mean number of symptoms experienced being 1.8. The most frequent symptom per physicians' perception was fatigue, whereas it is not the most common symptom from MPN patients' perspective. Blood count was the key indicator to determine treatment success from patients' view, whereas presence of a new symptom was the key indicator from physicians' perspective. Concordant with previous studies, our study revealed a lack of alignment between physician and patient perceptions relating to treatment goals and disease management. Nevertheless, the physical, emotional, work/activities and financial impacts on patients were minimal in Taiwan.
骨髓增殖性肿瘤(MPN)患者,包括骨髓纤维化、真性红细胞增多症和原发性血小板增多症患者,承受着明显的症状负担。本研究旨在收集台湾医生和患者的信息,以探讨他们对MPN的看法、治疗目标以及对疾病管理的满意度。作为标志性调查扩展的一部分,2018年9月至2018年11月在台湾对患者和医生进行了一项横断面在线调查。总体而言,50名MPN患者和30名医生参与了本研究。症状负担较低,平均经历的症状数量为1.8个。从医生的认知来看,最常见的症状是疲劳,而从MPN患者的角度来看,它并不是最常见的症状。从患者的观点来看,血细胞计数是确定治疗成功的关键指标,而从医生的角度来看,出现新症状是关键指标。与先前的研究一致,我们的研究表明,医生和患者在治疗目标和疾病管理方面的认知缺乏一致性。然而,在台湾,对患者的身体、情感、工作/活动和经济影响最小。