患者和高级从业人员的看法 症状负担和症状管理 在无情的系统性巨细胞瘤中
Sandra Kurtin1, Susan Woodward2, Erin Kolb3
1From University of Arizona Cancer Center, Tucson, Arizona.
Journal of the advanced practitioner in oncology
|July 2, 2025
概括
患者和高级从业人员 (AP) 的观点揭示了管理惰性全身性巨细胞瘤 (ISM) 症状负担的挑战. 解决这些障碍对于改善ISM患者的生活质量和疾病控制至关重要.
科学领域:
- 血液学 血液学 血液学
- 在瘤学瘤学.
- 过敏和免疫学 过敏和免疫学
背景情况:
- 症状负担是惰性系统性巨细胞瘤 (ISM) 患者寻求医疗护理的主要原因.
- 了解患者和高级从业人员 (AP) 对ISM症状负担的看法对于有效管理至关重要.
研究的目的:
- 描述AP和患者对ISM症状负担的看法.
- 确定ISM协作管理的障碍和策略.
- 在ISM中评估健康素养和多学科诊断/管理.
主要方法:
- 一项描述性研究,利用对AP和ISM患者的调查.
- 调查包括验证的工具来衡量症状负担,影响,障碍和策略.
- 在2024年12月至2025年2月期间从AP (APSHO,AIM) 和患者 (乳腺细胞疾病协会) 收集的数据.
主要成果:
- 患者报告的疾病控制 (24%) 与AP报告的控制 (76%) 相比.
- 大多数AP每年管理1-5名ISM患者,但对症状的管理感到舒适.
- 鉴定了选,多学科管理和共享决策实践中的差距.
结论:
- 这项研究提供了ISM患者和AP患者关于症状负担的反应的第一次直接比较.
- 在ISM中测量和减少症状负担存在持续的挑战,并发现了障碍和差距.
- 系统性乳腺细胞瘤的APSHO工具包旨在解决APs所发现的障碍和缺口.
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