遗传性肌病患者在 COVID-19 大流行期间面临的挑战。

Askeri Türken, Haşim Çapar, Mehmet Emin Kurt, Cuma Çakmak
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引用次数: 0

摘要

背景:神经肌肉疾病是一种遗传性疾病:神经肌肉疾病具有遗传性,据估计,神经肌肉疾病的发病率约为 1:2000:本横断面研究采用定性研究模式。采用滚雪球式抽样方法,通过在线调查向患者收集数据。研究按照 STROBE 检查表方法进行。人口统计学数据采用频数和百分比分析法,定性意见采用内容分析法:大多数参与者为男性,受教育程度较低。参与者表示在获得医疗保健服务方面遇到了物质和社会经济障碍。与会者还表示,自 COVID-19 以来,这些障碍有所加剧:结论:遗传性肌病患者受到社会的鄙视,并因疾病类型和功能水平的不同而面临不同的问题。建议决策者让特殊情况下的遗传性肌病患者能够获得医疗服务,并采取措施解决他们的问题。
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The challenges faced by patients with hereditary myopathy during the COVID-19 pandemic.

Background: Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000.

Methods: This cross-sectional research was conducted with a qualitative research model. Data were collected from patients with an online survey using the snowball sampling method. The study was conducted in accordance with the STROBE checklist methodology. Frequencies and percentages were used to analyse demographic data, and content analysis was used for qualitative opinions.

Results: Most of the participants were men and their education levels were low. Participants reported experiencing physical and socio-economic barriers to accessing healthcare. Participants also stated that these barriers have worsened since COVID-19.

Conclusions: Patients with hereditary myopathy are stigmatised by society and face different problems depending on the type of disease and level of function. It is recommended that decision-makers enable patients with hereditary myopathy in exceptional situations to access healthcare services and take steps to resolve their problems.

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