Background

Patients with facioscapulohumeral dystrophy (FSHD) suffer from slowly progressive muscle weakness. Approximately 20% of FSHD patients end up wheelchair-dependent. FSHD patients benefit from physical activity to maintain their muscle strength as much as possible. The impact of the COVID-19 pandemic on the health of FSHD patients was unknown.

Objective

This study assessed changes in daily care received, perceived psychosocial stress, and worsening of FSHD complaints in 2020. Furthermore, we compared COVID-19 infection incidence and severity of symptoms between FSHD patients and non-FSHD housemates.

Methods

Three online survey rounds were sent out to all adult participants of the Dutch FSHD registry regarding daily care received, perceived psychosocial stress, COVID-19 infection rate, and COVID-19 symptoms severity. They also included COVID-19-related questions regarding the participants’ housemates, which served as control group.

Results

Participation rate was 210 (61%), 186 (54%), and 205 (59%) for survey 1, 2, and 3, respectively. Care reduction was reported by 42.7%, 40%, and 28.8% of the participants in the respective surveys. Perceived psychosocial stress increased in 44%, 30%, and 40% of the participants. Compared to the 197 non-FSHD housemates, the 213 FSHD patients reported more possibly COVID-19-related symptoms (27% vs. 39%, p = 0.017) of mostly minimal severity (63%). No difference in (possible) COVID-19 infection incidence rates was found (2.0% vs. 2.8%, p = 0.527).

Conclusions

The COVID-19 pandemic negatively impacted care received and increased perceived psychosocial stress in FSHD patients. However, COVID-19 infection incidence in FSHD patients was similar to their non-FSHD housemates.

中文翻译：

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前两次 COVID-19 爆发期间患有面肩肱型肌营养不良症：荷兰的一项重复患者调查

背景

面肩肱营养不良 (FSHD) 患者患有缓慢进行性的肌肉无力。大约 20% 的 FSHD 患者最终依赖轮椅。FSHD 患者可以从体力活动中受益，以尽可能保持肌肉力量。COVID-19 大流行对 FSHD 患者健康的影响尚不清楚。

客观的

这项研究评估了 2020 年接受的日常护理的变化、感知的社会心理压力以及 FSHD 投诉的恶化。此外，我们还比较了 FSHD 患者和非 FSHD 室友之间的 COVID-19 感染发生率和症状严重程度。

方法

向荷兰 FSHD 登记处的所有成年参与者发出了三轮在线调查，内容涉及日常护理、感知的社会心理压力、COVID-19 感染率和 COVID-19 症状严重程度。他们还包括有关参与者室友（作为对照组）的与 COVID-19 相关的问题。

结果

调查 1、2 和 3 的参与率分别为 210 人（61%）、186 人（54%）和 205 人（59%）。在相应的调查中，42.7%、40% 和 28.8% 的参与者表示护理减少。44%、30% 和 40% 的参与者感受到的社会心理压力增加。与 197 名非 FSHD 室友相比，213 名 FSHD 患者报告了更多可能与 COVID-19 相关的症状（27% vs. 39%，p =  0.017），但严重程度大多较轻（63%）。未发现（可能的）COVID-19 感染发生率存在差异（2.0% 与 2.8%，p =  0.527）。

结论

COVID-19 大流行对 FSHD 患者接受的护理产生了负面影响，并增加了其感知的社会心理压力。然而，FSHD 患者的 COVID-19 感染率与其非 FSHD 室友相似。