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Updated: Jul 23, 2025

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患者,受苦者,受害者,伤亡者或患有宫肌病的人:让我们决定我们的标识符
Timothy F Boerger1, Benjamin M Davies2, Iwan Sadler3
1Physical Therapy, Marquette University, Milwaukee, Wisconsin, USA.
Integrated healthcare journal
|July 13, 2023
概括
在讨论诸如宫骨髓损伤等疾病时,最好是询问患者他们喜欢的术语. 在RECODE-DCM研究发现,咨询个人诊断,确保尊重和准确的语言使用.
科学领域:
- 医学术语和神经疾病中的患者倡导.
背景情况:
- 生物医学期刊往往更喜欢人第一语言 (PFL),而不是身份第一语言 (IFL).
- 然而,一些患者群体,包括那些患有聋或某些神经疾病的患者,可能更喜欢IFL.
- 在神经学研究文献中,坚持PFL是不一致的.
研究的目的:
- 为了确定患有退行性宫骨髓病 (DCM) 个体的首选标识符.
- 在RECODE-DCM倡议中建立关于尊重和准确的患者语言的共识.
主要方法:
- 在RECODE-DCM指导委员会进行了协商一致的过程.
- 成员包括患有宫骨髓病的个体.
主要成果:
- 该研究的重点是为退行性宫骨髓病建立首选术语.
- 一个共识过程被用来确定合适的标识符.
结论:
- 咨询患有特定诊断的个人对于确定他们喜欢的术语至关重要.
- 这种方法确保了对DCM等疾病的研究和临床实践中的尊重和准确的代表性.
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