{"title":"The impact of COVID-19 pandemic on patients with Huntington's disease and care-givers: A French survey","authors":"Sara Meoni , Elena Moro","doi":"10.1016/j.ensci.2024.100517","DOIUrl":null,"url":null,"abstract":"<div><p>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).</p><p>The main objective of the study was to interview people with HD and their caregivers in the Auvergne-Rhone Alpes region, France.</p><p>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.</p><p>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.</p><p>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.</p></div>","PeriodicalId":37974,"journal":{"name":"eNeurologicalSci","volume":"36 ","pages":"Article 100517"},"PeriodicalIF":0.0000,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2405650224000248/pdfft?md5=a3543e8bd9c10af63a9f11a7f6618ae5&pid=1-s2.0-S2405650224000248-main.pdf","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"eNeurologicalSci","FirstCategoryId":"1085","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2405650224000248","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"Neuroscience","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍：
eNeurologicalSci provides a medium for the prompt publication of original articles in neurology and neuroscience from around the world. eNS places special emphasis on articles that: 1) provide guidance to clinicians around the world (Best Practices, Global Neurology); 2) report cutting-edge science related to neurology (Basic and Translational Sciences); 3) educate readers about relevant and practical clinical outcomes in neurology (Outcomes Research); and 4) summarize or editorialize the current state of the literature (Reviews, Commentaries, and Editorials). eNS accepts most types of manuscripts for consideration including original research papers, short communications, reviews, book reviews, letters to the Editor, opinions and editorials. Topics considered will be from neurology-related fields that are of interest to practicing physicians around the world. Examples include neuromuscular diseases, demyelination, atrophies, dementia, neoplasms, infections, epilepsies, disturbances of consciousness, stroke and cerebral circulation, growth and development, plasticity and intermediary metabolism. The fields covered may include neuroanatomy, neurochemistry, neuroendocrinology, neuroepidemiology, neurogenetics, neuroimmunology, neuroophthalmology, neuropathology, neuropharmacology, neurophysiology, neuropsychology, neuroradiology, neurosurgery, neurooncology, neurotoxicology, restorative neurology, and tropical neurology.
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