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Robert S Zeiger1, Kevin Y Tse2, Qiaowu Li3
1Department of Allergy, Kaiser Permanente Southern California, San Diego, Calif; Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, Calif; Department of Clinical Science, Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, Calif.
惰性系统性巨细胞瘤 (ISM) 显著影响日常生活,许多患者经历了困难的诊断和恶化的症状. 这种情况明显影响生活和工作的质量,突出需要更好的理解和管理.
科学领域:
- 血液学 血液学 血液学
- 在瘤学瘤学.
- 巨细胞疾病 巨细胞疾病
背景情况:
- 无情的全身性乳腺细胞瘤 (ISM) 是最常见的系统性乳腺细胞瘤的亚型.
- 需要更深入地了解ISM的患者体验.
研究的目的:
- 为了调查ISM患者的诊断旅程.
- 评估症状严重程度及其对生活质量,日常活动和工作的影响.
- 评估ISM中的医疗保健利用率.
主要方法:
- 调查数据从40名已确诊的ISM成年人中收集.
- 使用的验证问卷:ISM症状评估表格 (ISM-SAF) 和SF-12v1.1.
- 统计分析包括斯皮尔曼相关性和克鲁斯卡尔-瓦利斯测试,以评估症状负担和生活质量相关性.
主要成果:
- 对ISM的诊断过程通常超过2年,涉及多次医疗保健访问.
- 患者在诊断后报告了每日症状和严重程度的恶化,生活质量得分较低 (PCS和MCS).
- 较高的症状负担与身体和精神生活质量下降以及工作能力受影响相关.
结论:
- ISM是一种沉重的疾病,影响了许多患者的日常生活.
- 症状严重程度与生活质量和日常功能下降有显著的相关性.
- 目前以症状为导向的治疗方法的疗效有限.
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