遗传性血管性水肿治疗方式与疾病负担研究进展

doi:10.35541/cjd.20220205

中华皮肤科杂志 ›› 2024, e20220205.doi: 10.35541/cjd.20220205

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遗传性血管性水肿治疗方式与疾病负担研究进展

刘佳^1，2 谷映桦^1，2 贺小宁^1，2

¹天津大学药物科学与技术学院，天津 300072；²天津大学社会科学调查与数据中心，天津 300072

收稿日期:2022-03-29 修回日期:2023-03-27 发布日期:2024-03-11
通讯作者: 贺小宁 E-mail:hexn@tju.edu.cn

Treatment and disease burden of hereditary angioedema

Liu Jia^1,2, Gu Yinghua^1,2, He Xiaoning^1,2

¹School of Pharmaceutical Science and Technology, Tianjin University, Tianjin 300072, China; ²Center for Social Survey and Data, Tianjin University, Tianjin 300072, China

Received:2022-03-29 Revised:2023-03-27 Published:2024-03-11
Contact: He Xiaoning E-mail:hexn@tju.edu.cn

摘要/Abstract

摘要： 【摘要】遗传性血管性水肿（HAE）是一种常染色体显性遗传病，主要表现为皮肤和黏膜水肿，其全球患病率约为1/50 000，我国目前尚缺乏相关流行病学数据。作为一种罕见病，HAE在临床和社会中的认知度至今仍然很低，因此常被误诊、误治，严重影响患者的生活质量和寿命，为家庭和社会带来沉重的经济负担。本研究对HAE的流行病学、治疗方式、患者经济负担以及患者健康相关生命质量进行梳理与总结，旨在促进临床医生及医疗卫生决策者充分认识HAE。

关键词: 血管水肿, 遗传性, 患病代价, 治疗, 生活质量

Abstract: 【Abstract】 Hereditary angioedema （HAE） is an autosomal dominant genetic disease characterized by swelling of the skin and mucosa. The global prevalence of HAE is about 1/50 000, but relevant epidemiological data are still lacking in China. As a rare disease, HAE is still poorly recognized in clinical practice and society, often leading to misdiagnosis and incorrect treatment. Moreover, it seriously affects the quality of life and lifespan of patients, and brings a heavy economic burden to families and society. This review summarizes the epidemiology, treatment strategies, economic burden of HAE, as well as health-related quality of life of patients, aiming to improve the understanding of HAE among clinicians and healthcare decision-makers.

Key words: Angioedemas, hereditary, Cost of illness, Therapy, Quality of life

刘佳谷映桦贺小宁. 遗传性血管性水肿治疗方式与疾病负担研究进展[J]. 中华皮肤科杂志, 2024,e20220205. doi:10.35541/cjd.20220205

Liu Jia, Gu Yinghua, He Xiaoning, . Treatment and disease burden of hereditary angioedema[J]. Chinese Journal of Dermatology,2024,e20220205. doi:10.35541/cjd.20220205

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遗传性血管性水肿治疗方式与疾病负担研究进展

Treatment and disease burden of hereditary angioedema

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