Meoni Sara, Moro Elena
Université Grenoble Alpes, Inserm, U1216, CHU Grenoble Alpes, Grenoble Institut of Neurosciences, 38000 Grenoble, France.
"Aldo Ravelli" Center for Nanotechnology and Neurostimulation, University of Milan, Milan, Italy.
eNeurologicalSci. 2024 Jul 20;36:100517. doi: 10.1016/j.ensci.2024.100517. eCollection 2024 Sep.
Although the impact of the first wave of the COVID-19 pandemic on people with several neurological diseases has been largely investigated, little is available concerning people with Huntington's disease (HD). The main objective of the study was to interview people with HD and their caregivers in the Auvergne-Rhone Alpes region, France. The interview consisted of 16 items concerning general and medical information, and the impact of the first wave of COVID-19 pandemic on the medical care of people with HD and on their caregivers. The questionnaire was made available as online survey from October 1st, 2020 until November 15th, 2020. Fifty-two subjects participated (13 men, 39 women, mean age of 47.3 ± 15.5 years). Almost half participants (48%) experienced a worsening of pre-existing symptoms, with new-onset symptoms in the 44% of cases. The most frequent worsening was reported in gait and balance issues (67%), fatigue (58%), anxiety (50%), and depression (50%). The 70.8% of participants reported an inappropriate overall care of HD due to long delays to access medical care (30%) and other health care teams (60%). More than half of the participants (54.2%) reported that the COVID-19 pandemic had a negative impact on their caregiver/family. Our findings emphasize the negative impact of the first wave of COVID-19 pandemic on the healthcare of HD population and their caregivers. Not only some symptoms were aggravated, but new symptoms appeared during the pandemic. In the future, health policies should be considered to improve the care of patients with rare diseases such as HD.
尽管新冠疫情第一波对患有多种神经系统疾病的人群的影响已得到大量研究，但关于亨廷顿舞蹈症（HD）患者的研究却很少。本研究的主要目的是对法国奥弗涅-罗讷-阿尔卑斯地区的HD患者及其照料者进行访谈。访谈包括16个项目，涉及一般信息和医疗信息，以及新冠疫情第一波对HD患者医疗护理及其照料者的影响。该问卷于2020年10月1日至2020年11月15日作为在线调查提供。52名受试者参与（13名男性，39名女性，平均年龄47.3±15.5岁）。近一半参与者（48%）原有症状加重，44%的病例出现了新症状。最常见的症状加重情况是步态和平衡问题（67%）、疲劳（58%）、焦虑（50%）和抑郁（50%）。70.8%的参与者报告称，由于获得医疗护理的长时间延误（30%）和其他医疗团队（60%），HD的整体护理不恰当。超过一半的参与者（54.2%）报告称，新冠疫情对其照料者/家人产生了负面影响。我们的研究结果强调了新冠疫情第一波对HD患者及其照料者医疗保健的负面影响。疫情期间不仅一些症状加重，还出现了新症状。未来，应考虑制定卫生政策，以改善对HD等罕见病患者的护理。
