患者报告的结果和医疗服务提供者对系统性巨细胞瘤的看法:PRISM研究的结果
Massimo Triggiani1, Jessica Hobart2, Iván Alvarez-Twose3
1Division of Allergy and Clinical Immunology, University of Salerno, Salerno, Italy.
概括
系统性乳腺细胞瘤 (SM) 显著影响患者的生活质量和工作能力,患者和医疗保健提供者都报告了高症状负担. 这项欧洲调查突出了管理SM和改善患者结果的挑战.
科学领域:
- 血液学 血液学 血液学
- 在瘤学瘤学.
- 公共卫生 公共卫生
背景情况:
- 系统性乳腺细胞瘤 (SM) 是一种罕见的克隆性乳腺细胞疾病,主要由KIT D816V突变驱动.
- 肌痛性硬化症的特征是不可预测和使人虚弱的症状影响患者的日常生活.
研究的目的:
- 评估在欧洲对全身性巨细胞瘤 (SM) 的看法和负担.
- 收集患者和医疗保健提供者 (HCP) 关于MS诊断,症状负担,生活质量 (QoL) 和工作影响的见解.
主要方法:
- 系统性乳腺细胞瘤的感知现实和见解 (PRISM) 调查涉及7个欧洲国家的540名患者受访者和618名医疗保健人员受访者.
- 进行了两项独立调查:119项患者调查和103项HCP调查.
主要成果:
- 患者报告高症状负担,身体和精神健康下降,对工作能力有显著影响 (58.9%).
- 尽管服用多种药物,但患者经历了显著的QoL降低.
- 医疗人员还认为,MS对患者的QoL有显著的负面影响,改善QoL和生存率是主要治疗目标.
结论:
- PRISM调查是最大的国际和第一个欧洲研究,从患者和医疗人员的角度评估SM负担.
- 患者和医疗保健工作者都认为,与MS相关的症状负担很高,生活质量降低,工作能力受损.
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