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2019年冠状病毒病大流行对患有罕见皮肤病患者的影响。

The impact of COVID-19 pandemic on dermatology patients with rare skin diseases.

作者信息

Vargu Migena, Dedej Sabina, Vasili Ermira

机构信息

Dermatology Service, University Hospital Center "Mother Teresa", Tirana, Albania.

出版信息

Dermatol Reports. 2024 Feb 2;16(4):9879. doi: 10.4081/dr.2024.9879. eCollection 2024 Nov 21.

DOI:10.4081/dr.2024.9879
PMID:39669880
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11632452/
Abstract

The COVID-19 pandemic has caused a global health crisis, presenting novel challenges while worsening preexisting difficulties for individuals with rare diseases. Internationally, they have experienced disruptions in their medical care, with a lack of access to essential treatments and diagnostics. We focused on the specific challenges faced by individuals living with rare skin diseases in Albania, a country with limited healthcare infrastructure. The pandemic led to a significant decrease in our service, resulting in an 87.1% reduction in patients hospitalized in 2020 compared to 2019. Notable gender and age disparities were observed in hospitalizations, with a shift towards more male patients and a decline in younger age groups seeking medical attention. Innovative approaches such as telemedicine helped maintain care for this vulnerable patient population. Further research is required to understand the long-term impacts of the pandemic on individuals with rare skin diseases and develop strategies for their care in future emergencies.

摘要

新冠疫情引发了一场全球健康危机,带来了新的挑战,同时也加剧了罕见病患者原有的困境。在国际上,他们的医疗护理受到干扰,无法获得基本的治疗和诊断。我们关注了阿尔巴尼亚患有罕见皮肤病的患者所面临的具体挑战,该国的医疗基础设施有限。疫情导致我们的服务大幅减少,2020年住院患者比2019年减少了87.1%。住院情况存在显著的性别和年龄差异,男性患者增多,寻求医疗护理的年轻人群减少。远程医疗等创新方法有助于为这一弱势群体提供护理。需要进一步研究以了解疫情对罕见皮肤病患者的长期影响,并制定在未来紧急情况下为他们提供护理的策略。

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本文引用的文献

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Impact of the COVID-19 pandemic on health care and daily life of patients with rare diseases from the perspective of patient organizations - a qualitative interview study.从患者组织的角度看 COVID-19 大流行对罕见病患者医疗和日常生活的影响 - 一项定性访谈研究。
Orphanet J Rare Dis. 2023 Jun 21;18(1):154. doi: 10.1186/s13023-023-02771-w.
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The Experience of a Tertiary Reference Hospital in the Study of Rare Neurological Diseases.三级参考医院在罕见神经疾病研究中的经验。
Medicina (Kaunas). 2023 Jan 30;59(2):266. doi: 10.3390/medicina59020266.
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Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study.新冠疫情对法国罕见病和未确诊疾病患者护理的影响:一项基于人群的纵向研究。
Orphanet J Rare Dis. 2022 Dec 9;17(1):430. doi: 10.1186/s13023-022-02580-7.
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RSDB: A rare skin disease database to link drugs with potential drug targets for rare skin diseases.RSDB:一个罕见皮肤病数据库,用于将药物与罕见皮肤病的潜在药物靶点联系起来。
Sci Data. 2022 Aug 26;9(1):521. doi: 10.1038/s41597-022-01654-2.
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