真性红细胞增多症患者和医生对治疗期望和症状学的看法:来自Landmark 2.0全球健康调查的见解

IF 7.6 2区 医学 Q1 HEMATOLOGY
HemaSphere Pub Date : 2025-03-24 DOI:10.1002/hem3.70106
Claire N. Harrison, David M. Ross, Laura Maria Fogliatto, Lynda Foltz, Lambert Busque, Zhijian Xiao, Florian H. Heidel, Michael Koehler, Giuseppe A. Palumbo, Massimo Breccia, Norio Komatsu, Keita Kirito, Blanca Xicoy Cirici, Joaquin Martinez-Lopez, Alicia Rovo, Cheryl Petruk, Catalin Bobirca, Laura Mirams, Abigail McMillan, Gavin Harper, Jean-Jacques Kiladjian
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引用次数: 0

摘要

真性红细胞增多症(PV)是一种骨髓增生性肿瘤,具有高症状和心理负担,导致生活质量(QoL)下降。PV患者发生心血管(CV)并发症的风险增加,因此定期监测至关重要。Landmark 2.0调查是在全球范围内对PV患者及其治疗医生进行的,以确定在PV管理方面的任何潜在认知差距。数据收集于2021年4月至2022年4月期间,来自11个国家的医生和患者。总体而言,133名医生和274名PV患者参与了调查。医生和患者在报告是否在常规就诊期间进行症状评估和基本CV评估方面存在差异(分别为83%对68%和64%对55%)。情绪评估没有常规进行(36%的医生和34%的患者报告)。患者认为躯体症状对生活质量的影响最大(67%);然而,医生不太可能报告最常见的症状,如瘀伤、睡眠困难、不活动和抑郁。虽然医生和患者都以改善症状为目标,但他们的治疗目标不同:医生专注于控制红细胞压积、预防血栓形成事件和减小脾脏大小,而患者则专注于减缓疾病进展。患者对治疗的满意度普遍较高,但在治疗后期有所下降。总的来说,这些数据强调了患者-医生对PV管理和治疗期望的看法的差异,显示了沟通方面的差距和对更多患者教育的需求,并突出了临床实践中潜在改进的领域。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey

Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey

Polycythemia vera (PV) is a myeloproliferative neoplasm associated with a high symptom and psychological burden, resulting in decreased quality of life (QoL). Patients with PV have an increased risk of cardiovascular (CV) complications, making regular monitoring crucial. The Landmark 2.0 survey was conducted worldwide among patients with PV and their treating physicians to identify any potential gaps in perceptions regarding PV management. Data were collected between April 2021 and April 2022 from physicians and patients across 11 countries. Overall, 133 physicians and 274 patients with PV participated in the survey. There were discrepancies between physicians and patients in reporting whether symptom assessments and basic CV assessments were conducted during routine visits (83% vs. 68% and 64% vs. 55%, respectively). Emotional assessments were not performed routinely (reported by 36% of physicians and 34% of patients). Patients attributed the highest impact on QoL to physical symptoms (67%); however, physicians were less likely to report highly prevalent symptoms such as bruising, difficulty sleeping, inactivity, and depression among the most common symptoms. While both physicians and patients aimed for symptom improvement, their treatment goals differed: physicians focused on managing hematocrit, preventing thrombotic events, and reducing spleen size, while patients focused on slowing down disease progression. Patient satisfaction with treatment was generally high but decreased in later therapy stages. Overall, these data underscore the disparity in patient–physician perceptions of PV management and treatment expectations, showing the gaps in communication and the need for greater patient education, as well as highlighting areas for potential improvement in clinical practice.

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来源期刊
HemaSphere
HemaSphere Medicine-Hematology
CiteScore
6.10
自引率
4.50%
发文量
2776
审稿时长
7 weeks
期刊介绍: HemaSphere, as a publication, is dedicated to disseminating the outcomes of profoundly pertinent basic, translational, and clinical research endeavors within the field of hematology. The journal actively seeks robust studies that unveil novel discoveries with significant ramifications for hematology. In addition to original research, HemaSphere features review articles and guideline articles that furnish lucid synopses and discussions of emerging developments, along with recommendations for patient care. Positioned as the foremost resource in hematology, HemaSphere augments its offerings with specialized sections like HemaTopics and HemaPolicy. These segments engender insightful dialogues covering a spectrum of hematology-related topics, including digestible summaries of pivotal articles, updates on new therapies, deliberations on European policy matters, and other noteworthy news items within the field. Steering the course of HemaSphere are Editor in Chief Jan Cools and Deputy Editor in Chief Claire Harrison, alongside the guidance of an esteemed Editorial Board comprising international luminaries in both research and clinical realms, each representing diverse areas of hematologic expertise.
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