Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
Department for Health Evidence, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
Acta Neurol Belg. 2024 Apr;124(2):559-566. doi: 10.1007/s13760-023-02443-3. Epub 2024 Jan 13.
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.
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.
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.
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).
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.
面肩肱型肌营养不良症（FSHD）患者会出现进行性肌肉无力。大约 20%的 FSHD 患者最终需要依赖轮椅。FSHD 患者通过体育活动使肌肉力量尽可能保持。然而，COVID-19 大流行对 FSHD 患者健康的影响尚不清楚。
本研究评估了 2020 年 FSHD 患者日常护理接受情况、感知的心理社会压力以及 FSHD 症状恶化情况的变化。此外，我们比较了 FSHD 患者与非 FSHD 同住者的 COVID-19 感染发生率和症状严重程度。
我们向荷兰 FSHD 登记处的所有成年参与者发送了 3 轮在线调查，内容涉及日常护理接受情况、感知的心理社会压力、COVID-19 感染率和 COVID-19 症状严重程度。他们还包括了与参与者同住者有关的 COVID-19 相关问题，这些同住者作为对照组。
在第 1、2 和 3 轮调查中，分别有 210（61%）、186（54%）和 205（59%）的人参与。在各自的调查中，有 42.7%、40%和 28.8%的参与者报告护理减少。44%、30%和 40%的参与者感知到的心理社会压力增加。与 197 名非 FSHD 同住者相比，213 名 FSHD 患者报告了更多可能与 COVID-19 相关的症状（27%对 39%，p=0.017），且这些症状的严重程度大多为轻度（63%）。没有发现（可能的）COVID-19 感染发生率的差异（2.0%对 2.8%，p=0.527）。
COVID-19 大流行对 FSHD 患者的日常护理接受情况和感知的心理社会压力产生了负面影响。然而，FSHD 患者的 COVID-19 感染发生率与他们的非 FSHD 同住者相似。
