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患者报告的负担与染细胞瘤/偏角结质瘤诊断相关
Katherine I Wolf1, Linda Rose-Krasnor2, Stephanie Alband3
1Department of Medicine, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, Michigan, USA.
患有染细胞瘤和偏角细胞瘤 (PPGL) 的患者经历了严重的疾病负担,包括财务困难和延迟诊断. 改善对专家的准入可以提高护理,减少患者和医疗保健系统的压力.
科学领域:
- 内分泌学 在内分泌学.
- 在瘤学瘤学.
- 患者报告的结果
背景情况:
- 乳红细胞瘤和偏角细胞瘤 (PPGLs) 是罕见的神经内分泌瘤,对患者报告的影响数据有限.
- 了解患者的体验对于改善临床护理和研究方向至关重要.
研究的目的:
- 为了探索患者的体验和疾病负担的染细胞瘤和偏角质瘤 (PPGL).
- 发现护理方面的差距,并为未来的研究和临床管理策略提供信息.
主要方法:
- 一个自我报告的在线调查分发给PPGL患者和那些有遗传倾向的患者.
- 该调查收集了有关社会人口统计,临床特征,诊断,治疗,护理质量和财务影响的数据.
主要成果:
- 总共有270名受访者报告了严重的疾病负担,包括中度至严重的财务困境和失业/工资.
- 患者在诊断中经历了相当大的延迟 (中位数>2年),并报告说感觉不被听到.
- 增加前往专门设施的旅行和延迟护理是常见的.
结论:
- 患有PPGL的患者体验的特点是实质性的身体,精神,情感和财务负担.
- 需要加强对PPGL专家和专门中心的访问,以更快地诊断和改善管理.
- 解决这些患者报告的结果可以减少PPGL对个人和医疗保健系统的整体负担.
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