COVID-19 对南非罕见病和先天性疾病患者的影响：范围审查。

IF 1.5 4区医学 Q2 MEDICINE, GENERAL & INTERNAL

Samj South African Medical Journal Pub Date : 2024-09-02 DOI:10.7196/SAMJ.2024.v114i9.1795

M C M Gomes, H L Malherbe

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引用次数: 0

摘要

罕见病（RDs）是一种个体罕见但集体常见的疾病，在南非（SA），估计每 15 个人中就有 1 人患有这种疾病。罕见病患者往往要经历漫长的诊断过程（平均超过 5 年），而且在获得医疗保健服务时会遇到许多障碍。为了评估 COVID-19 大流行对南非 RD 群体的影响，我们进行了一次范围审查。14 项研究符合纳入标准，并通过主题分析进行了探讨，结果表明，在大流行期间，RD 患者被进一步边缘化，尤其是在获得医疗保健方面。建议在政策制定和社区综合医疗保健方面增加包容性，以确保在未来的危机中不会将 RD 患者排除在外。

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The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review.

Rare diseases (RDs) are individually rare but collectively common, affecting an estimated 1 in 15 individuals in South Africa (SA). Patients with an RD often face a long diagnostic odyssey (>5 years on average) and many obstacles in accessing healthcare. A scoping review was conducted to assess the impact of the COVID-19 pandemic on the SA RD community. Fourteen studies met the inclusion criteria and were explored using thematic analysis, which showed that RD patients were further marginalised during the pandemic, particularly in access to healthcare. Increased inclusivity in policy creation and integrated community-based healthcare are recommended to ensure that RD patients are not an afterthought in future crises.

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来源期刊

Samj South African Medical Journal 医学-医学：内科

CiteScore

3.00

自引率

4.50%

发文量

175

审稿时长

4-8 weeks

期刊介绍： The SAMJ is a monthly peer reviewed, internationally indexed, general medical journal. It carries The SAMJ is a monthly, peer-reviewed, internationally indexed, general medical journal publishing leading research impacting clinical care in Africa. The Journal is not limited to articles that have ‘general medical content’, but is intending to capture the spectrum of medical and health sciences, grouped by relevance to the country’s burden of disease. This will include research in the social sciences and economics that is relevant to the medical issues around our burden of disease The journal carries research articles and letters, editorials, clinical practice and other medical articles and personal opinion, South African health-related news, obituaries, general correspondence, and classified advertisements (refer to the section policies for further information).