在西班牙,恶性多叶膜间皮瘤的治疗模式和人文负担
Susana Cedres1, Julio Calvete2, Gavin Taylor-Stokes3
1Hospital Universitari de La Vall d'Hebron, Barcelona, Spain.
概括
在西班牙,恶性多叶膜间皮瘤患者面临着严重的症状负担和糟糕的生活质量,尽管治疗符合指导方针. 护理人员还报告说,这种疾病对心理有很大的影响.
科学领域:
- 在瘤学瘤学.
- 公共卫生 公共卫生
- 流行病学 流行病学
背景情况:
- 恶性多层层层瘤 (MPM) 是一种具有长期潜伏期和不良预后的侵袭性癌症.
- 关于MPM治疗模式和患者负担的现实数据对于了解疾病影响至关重要.
- 之前的研究报告了国际数据,但缺乏西班牙患者数据.
研究的目的:
- 报道西班牙患者队列中恶性多叶膜间皮瘤的现实世界治疗模式和人文负担.
- 为西班牙患者和护理人员与MPM的经验提供见解.
主要方法:
- 从医生抽象的临床和治疗特征收集的数据.
- 患者填写的问卷评估了治疗满意度,症状和疾病影响.
- 护理人员填写的问卷评估了活动和日常生活的影响.
主要成果:
- 该研究包括241名西班牙患者,主要是老年男性,在第四阶段被诊断出患有不可切除的疾病; 54%的人暴露于石棉.
- 第一线治疗主要是双重化疗 (86%),在67%完成第一线治疗的人中使用了维持疗法.
- 患者经历了高症状负担和与健康相关的生活质量差,随着疾病的进展而下降. 67%的人每天都需要护理人员的帮助,这影响了护理人员的幸福感.
结论:
- 在西班牙,患有恶性多叶膜间皮瘤的患者通常按照当代指导方针进行治疗.
- 尽管遵守了指导方针,但患者及其护理人员报告说,疾病负担很大.
- 调查结果强调了与西班牙MPM相关的重大人文和临床挑战.
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