The COVID-19 pandemic restrictions affect the healthcare and health status of paediatric patients with neuromuscular diseases: a developing country perspective.

IF 1.3 4区 医学 Q4 NEUROSCIENCES Somatosensory and Motor Research Pub Date : 2022-12-16 DOI:10.1080/08990220.2022.2157392
Merve Kurt, Dilan Savas, Tulay Tarsuslu, Uluc Yis
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Abstract

Purpose: The COVID-19 pandemic has forced the rapid and unprecedented reorganisation of current practices in the treatment of neuromuscular disorders (NMD). Cessation of care and treatments can worsen the underlying condition, exacerbate symptoms, and increase anxiety, leading to a vicious circle and increased management concerns. This study aims to determine the changes in healthcare and health status of children with NMD from a developing country perspective.

Materials and methods: Forty-seven children with NMD were included in this cross-sectional study. The participants were contacted via phone call. The survey conducted for the study was included demographic data, changes and problems in healthcare, perceived health status change, and satisfaction with the services provided. Descriptive statistics were used to characterise the sample.

Results: The mean age of the children was 7.86 ± 3.45 years. The participants encountered 24.83 ± 26.54% of difficulties in getting medication care, and there was 69.95 ± 24.47% disruption in accessing routine medical care. The participants' rehabilitation sessions were disrupted in the 78.54 ± 14.93%, and there were 95.83 ± 10.03% deficiencies in therapists' informing. Children with NMD indicated that their perceived health status decreased compared to before pandemic in all parameters.

Conclusion: This study highlights the unfavourable indirect effect of the COVID-19 pandemic restrictions on healthcare and health status of paediatric patients with NMD. Since the COVID-19 pandemic is an uncertain process, the solutions or modifications should be promptly put into effect to improve the healthcare and health status of children with NMD.

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COVID-19 大流行的限制对患有神经肌肉疾病的儿科患者的医疗保健和健康状况的影响:发展中国家的视角。
目的:COVID-19 大流行迫使神经肌肉疾病 (NMD) 的治疗方法进行前所未有的快速重组。停止护理和治疗会使潜在病情恶化、加重症状并增加焦虑,从而导致恶性循环并增加管理方面的担忧。本研究旨在从发展中国家的角度确定 NMD 儿童在医疗保健和健康状况方面的变化:本横断面研究共纳入 47 名 NMD 儿童。研究人员通过电话与参与者取得联系。研究调查内容包括人口统计学数据、医疗保健方面的变化和问题、感知到的健康状况变化以及对所提供服务的满意度。研究使用描述性统计来描述样本的特征:儿童的平均年龄为(7.86 ± 3.45)岁。24.83 ± 26.54% 的受试者在获得药物治疗方面遇到困难,69.95 ± 24.47% 的受试者在获得常规医疗服务方面受到干扰。参与者的康复治疗中断率为 78.54 ± 14.93%,治疗师告知不足率为 95.83 ± 10.03%。患有 NMD 的儿童表示,他们认为自己的健康状况在所有参数上都比大流行前有所下降:本研究强调了 COVID-19 大流行限制对 NMD 儿童患者的医疗保健和健康状况的不利间接影响。由于 COVID-19 大流行是一个不确定的过程,因此应及时实施解决方案或修改措施,以改善 NMD 儿童的医疗保健和健康状况。
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来源期刊
Somatosensory and Motor Research
Somatosensory and Motor Research 医学-神经科学
自引率
0.00%
发文量
4
审稿时长
>12 weeks
期刊介绍: Somatosensory & Motor Research publishes original, high-quality papers that encompass the entire range of investigations related to the neural bases for somatic sensation, somatic motor function, somatic motor integration, and modeling thereof. Comprising anatomical, physiological, biochemical, pharmacological, behavioural, and psychophysical studies, Somatosensory & Motor Research covers all facets of the peripheral and central processes underlying cutaneous sensation, and includes studies relating to afferent and efferent mechanisms of deep structures (e.g., viscera, muscle). Studies of motor systems at all levels of the neuraxis are covered, but reports restricted to non-neural aspects of muscle generally would belong in other journals.
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