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巴西系统性红斑狼疮的研究现状:专家小组综述及建议

The landscape of systemic lupus erythematosus in Brazil: An expert panel review and recommendations.

机构信息

Rheumatology Department, Universidade do Estado do Rio de Janeiro (UERJ), Rio de Janeiro, Brazil.

Hospital Israelita Albert Einstein, São Paulo, Brazil.

出版信息

Lupus. 2021 Sep;30(10):1684-1695. doi: 10.1177/09612033211030008. Epub 2021 Jul 13.

Abstract

PURPOSE

The objective of this review is to address the barriers limiting access to diagnosis and treatment of systemic lupus erythematosus (SLE) and lupus nephritis (LN) in Brazil, specifically for patients in the public healthcare system, arguably those with the least access to innovation.

DESIGN

A selected panel of Brazilian experts in SLE/LN were provided with a series of relevant questions to address in a multi-day conference. During the conference, responses were discussed and edited by the entire group through numerous drafts and rounds of discussion until a consensus was achieved.

RESULTS

The authors propose specific and realistic recommendations for implementing access to innovative diagnostic tools and treatment alternatives for SLE/LN in Brazil. Moreover, in creating these recommendations, the authors strived to address barriers and impediments for technology adoption. The multidisciplinary care required for SLE/LN necessitates the collective participation of all involved stakeholders.

CONCLUSION

A great need exists to expand the adoption of innovative diagnostic tools and treatments for SLE/LN not only in Brazil but also in most countries, as access issues remain an urgent demand. The recommendations presented in this article can serve as a strategy for new technology adoption in other countries in a similar situation.

摘要

目的

本综述旨在探讨限制巴西系统性红斑狼疮(SLE)和狼疮性肾炎(LN)诊断和治疗的障碍,特别是针对公共医疗体系中的患者,因为这些患者可能较难获得创新疗法。

设计

一组来自巴西的 SLE/LN 专家被提供了一系列相关问题,以在一次为期多天的会议上进行讨论。在会议期间,全体小组成员通过多次草稿和讨论轮次对回复进行了讨论和编辑,直到达成共识。

结果

作者针对巴西 SLE/LN 患者提出了具体和现实的建议,以实现对创新诊断工具和治疗方案的可及性。此外,在制定这些建议时,作者努力解决技术采用的障碍和阻碍。SLE/LN 需要多学科的护理,因此需要所有利益相关者的共同参与。

结论

不仅在巴西,而且在大多数国家,都非常需要扩大 SLE/LN 的创新诊断工具和治疗方法的应用,因为获得治疗的机会仍然是一个紧迫的需求。本文提出的建议可以作为其他类似情况下新技术采用的策略。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/01b6/8489682/c516d5174cb5/10.1177_09612033211030008-fig1.jpg

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