炎症性乳腺癌(IBC)宣传--过去、现在和未来!

3区 生物学 Q1 Biochemistry, Genetics and Molecular Biology
Jeannine Donahue, Joshlyn Earls, Valerie Fraser, Ginny Mason, Heather Pirowski, Peggy Stephens
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引用次数: 0

摘要

患者代言人是指那些被诊断出患有他们所代言的疾病的人,是医疗保健领域不可或缺的利益相关者。对于那些被诊断出患有炎症性乳腺癌(IBC)的患者来说,"呼吁倡导 "是他们被诊断出患有一种罕见的侵袭性疾病的直接反应,这种疾病进展迅速,通常在几周或几个月内就会恶化。医学界对 IBC 有着极大的偏见和成见,这阻碍了对 IBC 的教育和研究。由于对这种疾病、其表现形式和治疗方法缺乏了解,许多 IBC 患者面临误诊。沟通是医疗保健的基石;这一点超越了患者与医护人员之间的关系。IBC 教育必须是一项基层举措。在炎症性乳腺癌的诊断、治疗、研究和生存方面,不应存在任何护理障碍。这不仅是肿瘤学家要学的一课,也是所有医疗服务提供者要学的一课。在本章中,您将了解到四位被诊断为 IBC 的女性如何独自面对在医疗保健系统中游刃有余的艰巨任务,并利用自己的经验帮助他人。总之,在定义 IBC 患者权益倡导在过去 25 年中不断演变的角色时,我们从不同患者权益倡导者的角度审视了已经完成的工作、面临的挑战以及仍需开展的工作。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Inflammatory breast cancer (IBC) advocacy-Past, present and future!

Patient advocates, referring to those individuals that have been diagnosed with the disease for which they advocate, are essential stake holders in healthcare. For those facing the stages of being diagnosed with Inflammatory Breast Cancer (IBC), the "call to advocate" is an immediate response to being diagnosed with a rare and aggressive disease that progresses rapidly, often in a matter of weeks or months. There is a great stigma and bias in the medical community that has inhibited the education and study of IBC. A lack of understanding of the disease, how it presents and how to treat it leaves many IBC patients facing misdiagnosis. Communication is a cornerstone of healthcare; this goes beyond the patient-provider dynamic. Education of IBC must be a grassroots initiative. There should be no barrier to care in the diagnosis, treatment, study and survivorship of inflammatory Breast Cancer. It is not just an oncologist's lesson to learn, but that of all providers in healthcare. In this chapter you will hear how 4 women who were diagnosed with IBC faced the difficult tasks of navigating through the healthcare system on their own and came out on the other side using their experience to help others. In conclusion, in defining the evolving roles of Patient Advocacy in IBC over the past 25 years, we examine what has been done, along with its challenges, and what work still remains from the perspectives of different patient advocates.

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来源期刊
International review of cell and molecular biology
International review of cell and molecular biology BIOCHEMISTRY & MOLECULAR BIOLOGY-CELL BIOLOGY
CiteScore
7.70
自引率
0.00%
发文量
67
审稿时长
>12 weeks
期刊介绍: International Review of Cell and Molecular Biology presents current advances and comprehensive reviews in cell biology-both plant and animal. Articles address structure and control of gene expression, nucleocytoplasmic interactions, control of cell development and differentiation, and cell transformation and growth. Authored by some of the foremost scientists in the field, each volume provides up-to-date information and directions for future research.
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