epidemic

流行病
  • 文章类型: Journal Article
    高血压已成为云南儿童和青少年面临的公共卫生挑战。这项研究的目的是评估昆明儿童和青少年与高血压相关的饮食和活动习惯,并制定有效的预防和控制策略,中国西南地区。
    于2019年进行的横断面研究涉及3,150名学生,13.25±2.77岁,多级,分层,从呈贡和富民地区随机抽样,中国西南地区。
    在3150名参与者中,6.19%从不喝牛奶,3.46%的人从未食用过新鲜水果。2.67%从未食用新鲜蔬菜,2.48%的人从不吃早餐,10.06%的人经常喝含糖饮料(软饮)。此外,21.56%的人每周进行中等强度运动少于一天,31.97%的人每周进行高强度运动少于一天。组内相关系数表明,总方差的49.40%归因于饮食水平,而42.10%归因于活动水平。吃新鲜蔬菜和水果,每周参加体育课,每周进行中等强度和高强度运动的频率是高血压的独立保护因素(P<0.01);饮用含糖饮料(软饮)是高血压的独立危险因素(P<0.05);不吃早餐是高血压的可能危险因素(P<0.15)。未发现与油炸食品或甜食每周消费的显着相关性(P<0.15)。
    昆明儿童青少年高血压不容忽视,中国西南地区。饮食和活动因素是可修改的。我们应该尽快制作全面的儿童健康教育材料。
    UNASSIGNED: Hypertension has become a public health challenge for Yunnan children and adolescents. The study aims is to assess the dietary and activity habits associated with hypertension in Kunming children and adolescents and to develop effective strategies for preventing and controlling, Southwest China.
    UNASSIGNED: Conducted in 2019, the cross-sectional study involved 3,150 students, aged 13.25 ± 2.77 years, multistage, stratified, randomly sampled from Chenggong and Fumin areas, Southwest China.
    UNASSIGNED: Among 3,150 participants, 6.19 % never drank milk, 3.46 % never consumed fresh fruit. 2.67 % never consumed fresh vegetables, 2.48 % never ate breakfast and 10.06 % frequently drank sugary beverages (soft drinking). Additionally, 21.56 % engaged in moderate-intensity exercise less than one Day a week, and 31.97 % performed high-intensity exercise less than one Day a week. The intraclass correlation coefficient indicated that 49.40 % of the total variance was attributed to the dietary level and 42.10 % was attributed to the activity level. Eating fresh vegetables and fruit, taking physical education classes they attended per week and the frequency of moderate-intensity and high-intensity exercise per week were independent protective factors for hypertension (P < 0.01); drinking sugary beverages (soft drinking) was a independent risk factor against hypertension (P < 0.05); breakfast skipping was a possible risk factor for hypertension (P < 0.15). No significant associations were found with fried food or sweet food weekly consumption (P < 0.15).
    UNASSIGNED: The hypertension of children and adolescents cannot be ignored in Kunming, Southwest china. Dietary and activity factors are modifiable. We should make comprehensive child-friendly health education materials as soon as possible.
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  • 文章类型: Journal Article
    背景:对SARS-CoV-2的个体免疫反应进行了充分研究,虽然这些反应对人群水平免疫动力学的综合影响仍然知之甚少。鉴于人群免疫对病原体传播的关键作用,划分驱动人群免疫进化的因素具有关键的公共卫生意义。
    方法:我们采用多阶段集群调查方法,在多米尼加共和国西北部和东南部招募了5岁及以上的个体。在大流行中期(2021年8月)和大流行晚期(2022年11月)收集配对血液样本。我们测量了针对SARS-CoV-2刺突蛋白的血清泛免疫球蛋白抗体。使用广义加性模型(GAMs)和随机森林模型来分析抗体水平变化与各种预测变量之间的关系。主成分分析和部分依赖图进一步探讨了预测因子与抗体变化之间的关系。
    结果:我们发现了抗体水平分布从不规则到归一化单峰高斯分布的转变,这是由滴度依赖性增强驱动的。这导致抗体水平在一个共同的免疫设定值附近收敛,与基线滴度和疫苗接种概况无关。
    结论:我们的结果表明,由广泛传播驱动的效价依赖性动力学以一致的方式指导人群免疫的进化。这些发现对有针对性的疫苗接种策略和改善未来传播的模型有意义。为了解人群免疫动态提供了初步蓝图,可以指导SARS-CoV-2和其他潜在病原体的公共卫生和疫苗政策。
    背景:该研究主要由疾病控制和预防中心资助U01GH002238(EN)。工资支持由WellcomeTrust赠款206250/Z/17/Z(AK)和澳大利亚国家健康与医学研究委员会调查员APP1158469(CLL)提供。
    BACKGROUND: Individual immune responses to SARS-CoV-2 are well-studied, while the combined effect of these responses on population-level immune dynamics remains poorly understood. Given the key role of population immunity on pathogen transmission, delineation of the factors that drive population immune evolution has critical public health implications.
    METHODS: We enrolled individuals 5 years and older selected using a multistage cluster survey approach in the Northwest and Southeast of the Dominican Republic. Paired blood samples were collected mid-pandemic (Aug 2021) and late pandemic (Nov 2022). We measured serum pan-immunoglobulin antibodies against the SARS-CoV-2 spike protein. Generalized Additive Models (GAMs) and random forest models were used to analyze the relationship between changes in antibody levels and various predictor variables. Principal component analysis and partial dependence plots further explored the relationships between predictors and antibody changes.
    RESULTS: We found a transformation in the distribution of antibody levels from an irregular to a normalized single peak Gaussian distribution that was driven by titre-dependent boosting. This led to the convergence of antibody levels around a common immune setpoint, irrespective of baseline titres and vaccination profile.
    CONCLUSIONS: Our results suggest that titre-dependent kinetics driven by widespread transmission direct the evolution of population immunity in a consistent manner. These findings have implications for targeted vaccination strategies and improved modeling of future transmission, providing a preliminary blueprint for understanding population immune dynamics that could guide public health and vaccine policy for SARS-CoV-2 and potentially other pathogens.
    BACKGROUND: The study was primarily funded by the Centers for Disease Control and Prevention grant U01GH002238 (EN). Salary support was provided by Wellcome Trust grant 206250/Z/17/Z (AK) and the Australian National Health and Medical Research Council Investigator grant APP1158469 (CLL).
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  • 文章类型: Journal Article
    登革热是全球范围内发生的重要媒介传播疾病。登革热病毒(DENV)感染可导致潜在的危及生命的疾病。迄今为止,没有DENV特异性抗病毒治疗。此外,没有同样有效的泛血清型登革热病毒疫苗。最近,两种DENV疫苗,Dengvaxia和Qdenga,被许可有限使用。然而,这些都没有在孟加拉国获得批准。DENV是由伊蚊传播的,和全球变暖导致的气候变化有利于伊蚊繁殖在孟加拉国增加DENV感染中起着重要作用。登革热是孟加拉国严重的公共卫生问题。2023年,孟加拉国爆发了最大规模的登革热疫情,在一个流行年度中,登革热病例(n=321,179)和登革热相关死亡人数(n=1,705)最高。如果个体感染不同的DENV血清型,则具有预先存在的DENV特异性免疫球蛋白G的个体中严重登革热的风险增加。迄今为止,媒介控制一直是控制登革热的主体;因此,立即,加强,有效的媒介控制计划至关重要,应定期进行以控制孟加拉国的登革热暴发。此外,在孟加拉国使用DENV疫苗遏制登革热流行需要孟加拉国各自当局的更多考虑和判断。本综述对登革热暴发的控制和预防提供了展望。我们还讨论了在孟加拉国使用DENV疫苗减少登革热流行感染的挑战。
    Dengue is an important vector-borne disease occurring globally. Dengue virus (DENV) infection can result in a potentially life-threatening disease. To date, no DENV-specific antiviral treatment is available. Moreover, an equally effective pan-serotype dengue virus vaccine is not available. Recently, two DENV vaccines, Dengvaxia and Qdenga, were licensed for limited use. However, none of them have been approved in Bangladesh. DENV is transmitted by Aedes mosquitoes, and global warming caused by climate change favoring Aedes breeding plays an important role in increasing DENV infections in Bangladesh. Dengue is a serious public health concern in Bangladesh. In the year 2023, Bangladesh witnessed its largest dengue outbreak, with the highest number of dengue cases (n = 321,179) and dengue-related deaths (n = 1,705) in a single epidemic year. There is an increased risk of severe dengue in individuals with preexisting DENV-specific immunoglobulin G if the individuals become infected with different DENV serotypes. To date, vector control has remained the mainstay for controlling dengue; therefore, an immediate, strengthened, and effective vector control program is critical and should be regularly performed for controlling dengue outbreaks in Bangladesh. In addition, the use of DENV vaccine in curbing dengue epidemics in Bangladesh requires more consideration and judgment by the respective authority of Bangladesh. This review provides perspectives on the control and prevention of dengue outbreaks. We also discuss the challenges of DENV vaccine use to reduce dengue epidemics infection in Bangladesh.
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  • 文章类型: Journal Article
    今年我国儿科呼吸道感染病例明显增多,而肺炎支原体是主要的病原菌之一。本研究旨在了解安徽地区儿童肺炎支原体的流行病学特征,为该地区儿童肺炎支原体的预防和控制策略提供依据。从2015年1月至2023年11月,共纳入66,488例呼吸道感染儿科患者。这项研究的结果表明,安徽地区的肺炎支原体感染在2021-2023年期间具有很高的阳性率,特别是今年被认为是肺炎支原体感染的流行年。此外,肺炎支原体在女性儿童中的阳性率明显高于男性儿童,肺炎支原体在儿童中的感染率随着年龄的增长而显著增加,尤其是学龄儿童。
    目的:今年我国小儿呼吸道感染病例明显增多,而肺炎支原体是主要的病原菌之一。本研究旨在了解安徽地区儿童肺炎支原体的流行病学特征,为该地区儿童肺炎支原体的防控策略提供依据。
    The number of pediatric respiratory tract infection cases in China has significantly increased this year, and Mycoplasma pneumoniae is one of the main pathogens. This study aimed to investigate the epidemiological characteristics of M. pneumoniae in children in the Anhui region and to provide evidence for the prevention and control strategies of M. pneumoniae in children in this region. A total of 66,488 pediatric patients with respiratory tract infection were enrolled from January 2015 to November 2023 in this study. The results of this study exhibited that M. pneumoniae infection in the Anhui region was characterized by a high positive rate during 2021-2023, especially this year is considered a year of pandemic for M. pneumoniae infection. Moreover, the positive rate of M. pneumoniae in female children is significantly higher than in male children, and the infection rate of M. pneumoniae in children increases significantly with age, particularly in school-aged children.
    OBJECTIVE: The number of pediatric respiratory tract infection cases in China has significantly increased this year, and Mycoplasma pneumoniae is one of the main pathogens. This study aimed to investigate the epidemiological characteristics of M. pneumoniae in children in the Anhui region and provide evidence for the prevention and control strategies of M. pneumoniae in children in this region.
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  • 文章类型: Journal Article
    COVID-19大流行对公共卫生产生了灾难性影响,延伸到全世界的粮食系统和人们的生计,包括孟加拉国。这项研究旨在确定COVID-19大流行对孟加拉国西北部地区(Rajshahi和Rangpur)生计资产的影响。主要数据是使用多阶段抽样方法从320名从事高价值农业的农民那里收集的。使用一阶结构方程模型对数据进行了分析。研究结果表明,大流行对孟加拉国所有生计资产都有显著影响(p<0.01)。值得注意的是,人力资产表现出最大的影响,系数为0.740,依次为财务(0.709),social(0.684),自然(0.600),物理(0.542),和心理(0.537)资产。政府实施的封锁和行动限制被认为是大流行对生计产生负面影响的主要原因,其中包括收入损失,食品价格上涨,购买力下降,食品和医疗用品供应不足,社会不安全感增加,和抑郁症的上升,担心,和农民的焦虑。COVID-19和相关政策措施对高价值作物农民生计的影响扭转了过去十年取得的实质性经济和营养进步。这项研究建议通过直接现金转移和投入激励计划来关注农民的可持续生计,以最大程度地减少他们对COVID-19等大流行或未来任何其他危机的脆弱性。
    The COVID-19 pandemic has had a catastrophic impact on public health, extending to the food system and people\'s livelihoods worldwide, including Bangladesh. This study aimed to ascertain the COVID-19 pandemic impacts on livelihood assets in the North-Western areas (Rajshahi and Rangpur) of Bangladesh. Primary data were collected from 320 farmers engaged in high-value agriculture using a multistage sampling method. The data were analysed using first-order structural equation modelling. The findings reveal a significant impact (p < 0.01) of the pandemic on all livelihood assets in Bangladesh. Notably, human assets exhibited the highest impact, with a coefficient of 0.740, followed sequentially by financial (0.709), social (0.684), natural (0.600), physical (0.542), and psychological (0.537) assets. Government-imposed lockdowns and mobility restrictions were identified as the major causes of the pandemic\'s negative effects on livelihoods, which included lost income, rising food prices, decreased purchasing power, inadequate access to food and medical supplies, increased social insecurity, and a rise in depression, worry, and anxiety among farmers. The effects of COVID-19 and associated policy measures on the livelihoods of high-value crop farmers have reversed substantial economic and nutritional advances gained over the previous decade. This study suggests attention to the sustainable livelihoods of farmers through direct cash transfer and input incentive programs to minimize their vulnerability to a pandemic like COVID-19 or any other crisis in the future.
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  • 文章类型: Journal Article
    在最近的COVID-19大流行期间,政府实施了用于接触者追踪的移动应用程序,作为缓解病毒传播的快速有效解决方案。然而,这些看似直截了当的解决方案没有达到预期目标。根据以前的研究,本文旨在调查在疾病控制背景下影响接触追踪移动应用程序(CTMA)接受和使用的因素。本文的研究模型融合了接受和使用技术的统一理论和健康信念模型(HBM)。本研究涉及所有性别的770名法国参与者的不同样本,年龄,职业,和地区。健康信念模型的关键要素,与应用程序相关的技术因素,和社会因素,包括宗教信仰的中心地位,使用完善的测量量表进行评估。研究结果表明,几个因素,如感知的好处和感知的严重性,社会影响力,健康动机,和宗教的中心地位,显着影响使用CTMA的意图。这些发现表明,CTMA有望成为管理未来流行病的有价值的工具。然而,应对挑战,修订实施战略,在监管框架下与专业行业合作伙伴的潜在合作至关重要。这种实用的见解可以指导政策制定者和公共卫生官员的决策。
    During the recent COVID-19 pandemic, governments implemented mobile applications for contact tracing as a rapid and effective solution to mitigate the spread of the virus. However, these seemingly straightforward solutions did not achieve their intended objectives. In line with previous research, this paper aims to investigate the factors that influence the acceptance and usage of contact-tracing mobile apps (CTMAs) in the context of disease control. The research model in this paper integrates the Unified Theory of Acceptance and Use of Technology and the Health Belief Model (HBM). The present study involved a diverse sample of 770 French participants of all genders, ages, occupations, and regions. Critical elements from the Health Belief Model, technological factors related to the app, and social factors, including the centrality of religiosity, were assessed using well-established measurement scales. The research\'s findings demonstrate that several factors, such as perceived benefits and perceived severity, social influence, health motivation, and centrality of religiosity, significantly impact the intention to use a CTMA. These findings suggest that CTMAs hold promise as valuable tools for managing future epidemics. However, addressing challenges, revising implementation strategies, and potentially collaborating with specialized industry partners under regulatory frameworks are crucial. This practical insight can guide policymakers and public health officials in their decision-making.
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  • 文章类型: Journal Article
    背景:及时发现疾病暴发对公共卫生至关重要。人工智能(AI)可以识别数据中的模式,这些模式预示着流行病和大流行的开始。本范围审查审查了AI在流行病和大流行预警系统(EWS)中的有效性。目标:评估基于AI的系统预测流行病和大流行的能力,并确定挑战和改进策略。方法:进行了系统的范围审查。这篇综述包括了过去5年的研究,专注于EWS中的AI和机器学习应用。经过1087篇文章的筛选,选择33人进行专题分析。结果:审查发现,基于AI的EWS已在各种情况下得到有效实施,使用一系列算法。确定的关键挑战包括数据质量、模型可解释性,偏见,数据量,速度,品种,可用性,和粒度。还讨论了减轻AI偏差和提高系统适应性的策略。结论:人工智能在提高流行病检测的速度和准确性方面显示出了希望。然而,与数据质量相关的挑战,偏见,需要解决模型透明度问题,以提高基于AI的EWS的可靠性和通用性。持续监测和改进,以及整合社会和环境数据,对未来发展至关重要。
    Background: Timely detection of disease outbreaks is critical in public health. Artificial Intelligence (AI) can identify patterns in data that signal the onset of epidemics and pandemics. This scoping review examines the effectiveness of AI in epidemic and pandemic early warning systems (EWS). Objective: To assess the capability of AI-based systems in predicting epidemics and pandemics and to identify challenges and strategies for improvement. Methods: A systematic scoping review was conducted. The review included studies from the last 5 years, focusing on AI and machine learning applications in EWS. After screening 1087 articles, 33 were selected for thematic analysis. Results: The review found that AI-based EWS have been effectively implemented in various contexts, using a range of algorithms. Key challenges identified include data quality, model explainability, bias, data volume, velocity, variety, availability, and granularity. Strategies for mitigating AI bias and improving system adaptability were also discussed. Conclusion: AI has shown promise in enhancing the speed and accuracy of epidemic detection. However, challenges related to data quality, bias, and model transparency need to be addressed to improve the reliability and generalizability of AI-based EWS. Continuous monitoring and improvement, as well as incorporating social and environmental data, are essential for future development.
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  • 文章类型: Journal Article
    我们收集了2023年末在北京诊断为肺炎的128名儿科患者的呼吸道标本。77.3%(99/128)的患者检出肺炎支原体,36.4%(4/11),82.9%(34/41),3岁以下儿童占80.3%(61/76),3-6年,超过7年,分别。肺炎支原体(M.肺炎)使用P1基因分型进行表征,23SrRNA基因的结构域V的MLVA分型和测序。P1基因1型(P1-1;76.1%,54/71)和MLVA类型4-5-7-2(73.7%,73/99)占主导地位。MLVA鉴定了一种新的基因型:3-4-6-2。在100%的样品中检测到大环内酯耐药相关的突变,A2063G占99%,A2064G占1%。肺炎支原体阳性率高于以往报道,尤其是3岁以下的儿童,表明肺炎支原体流行在2023年末出现在北京,呈现低龄趋势,中国。较高比例的大环内酯耐药肺炎支原体,P1-1和4-5-7-2基因型肺炎支原体表明大环内酯耐药率增加和基因分型移位现象,这可能归因于这种流行病。此外,我们分析了73例肺炎支原体肺炎住院患者的完整临床信息.重症肺炎支原体肺炎的发生率为56.2%(41/73)。肺炎支原体肺炎患者发热持续时间较长,中位数为10.0天(IQR,8.0-13.0),并发症发生率较高(74.0%,54/73)。然而,在这个队列中,我们发现肺炎支原体肺炎的严重程度,合并感染,或并发症与肺炎支原体P1基因或MLVA类型无关。临床医生应该意识到感染大环内酯耐药肺炎支原体的患者表现出更严重的临床表现。
    We collected respiratory specimens from 128 pediatric patients diagnosed with pneumonia in Beijing in late 2023. Mycoplasma pneumoniae was detected in 77.3% (99/128) patients, with 36.4% (4/11), 82.9% (34/41), 80.3% (61/76) in children aged less than 3 years, 3-6 years, over 7 years, respectively. Mycoplasma pneumoniae (M. pneumoniae) was characterized using P1 gene typing, MLVA typing and sequencing of domain V of the 23S rRNA gene. P1 gene type 1 (P1-1; 76.1%, 54/71) and MLVA type 4-5-7-2 (73.7%, 73/99) were predominant. MLVA identified a new genotype: 3-4-6-2. Macrolide resistance-associated mutations were detected in 100% of samples, with A2063G accounting for 99% and A2064G for 1%. The positive rate of M. pneumoniae was higher compared to previous reports, especially in children less than 3 years, suggesting a M. pneumoniae epidemic showing a younger age trend occurred in late 2023 in Beijing, China. Higher proportions of macrolide-resistant M. pneumoniae, P1-1 and 4-5-7-2 genotype M. pneumoniae indicated increased macrolide resistance rate and genotyping shift phenomenon, which might be attributable to this epidemic. Additionally, complete clinical information from 73 M. pneumoniae pneumonia inpatients were analyzed. The incidence of severe M. pneumoniae pneumonia was 56.2% (41/73). Mycoplasma pneumoniae pneumonia patients exhibited longer duration of fever, with a median value of 10.0 days (IQR, 8.0-13.0), and higher incidence of complications (74.0%, 54/73). However, in this cohort, we found that the severity of M. pneumoniae pneumonia, co-infection, or complications were not associated with M. pneumoniae P1 gene or MLVA types. Clinicians should be aware that patients infected with macrolide-resistant M. pneumoniae exhibited more severe clinical presentations.
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  • 文章类型: Journal Article
    背景:化妆品中对植物地己酮环氧化物(PE)的过敏性接触性皮炎(ACD)的报道表明,PE与其母体化合物植物地己酮一样具有强大的致敏剂。
    目的:评估西班牙的一系列ACD合并PE的病例。
    方法:我们回顾了2019年1月至2023年6月在西班牙诊断的20例ACD患者使用含有PE的化妆品的记录。
    结果:所有20名患者对含有PE的化妆品发生了斑贴试验(PT)或重复的开放应用试验(ROAT)反应。所有女性都有眼睑湿疹。PE制剂的PT或ROAT在17/20(85%)中呈阳性。PE为1%,5%,10%和20%的宠物。在8/17、14/17、11/17和8/17患者中进行了斑贴测试;在6/8(75%)中呈阳性,13/14(92.85%),11/11(100%)和8/8(100%),分别。
    结论:监管机构应,不仅禁止特定的危险化妆品成分,但也考虑禁止或密切监视那些可能导致类似有害影响的密切相关的产品或衍生物。建议在pet中以5%的浓度进行带有PE的PT。较高的浓度(10%pet。)应在有5%宠物的PT时进行测试。PE是负的。
    BACKGROUND: Reports of allergic contact dermatitis (ACD) to phytonadione epoxide (PE) in cosmetics suggest that PE is as powerful a sensitiser as its parent compound phytonadione.
    OBJECTIVE: To evaluate a case series of ACD to PE in Spain.
    METHODS: We reviewed the records of 20 patients with ACD to cosmetics containing PE diagnosed across Spain between January 2019 and June 2023.
    RESULTS: All 20 patients developed patch test (PT) or repeated open application test (ROAT) reactions to cosmetics containing PE. All involved women with eyelid eczema. PT or ROAT with PE preparations were positive in 17/20 (85%). PE at 1%, 5%, 10% and 20% in pet. was patch-tested in 8/17, 14/17, 11/17 and 8/17 patients; being positive in 6/8 (75%), 13/14 (92.85%), 11/11 (100%) and 8/8 (100%), respectively.
    CONCLUSIONS: Regulators should, not only ban the specific dangerous cosmetic ingredients, but also consider to ban or keep under close surveillance those closely related products or derivatives that might potentially cause similar harmful effects. PTs with PE are suggested to be performed at a 5% concentration in pet. Higher concentrations (10% pet.) should be tested whenever PTs with 5% pet. PE are negative.
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  • 文章类型: Journal Article
    尽管已经对第一波COVID-19大流行对几种神经系统疾病患者的影响进行了大量调查,关于亨廷顿病(HD)的人几乎没有。该研究的主要目的是采访奥弗涅-罗纳阿尔卑斯地区的HD患者及其护理人员,法国。访谈包括16个项目,涉及一般和医疗信息,以及第一波COVID-19大流行对HD患者及其护理人员的医疗保健的影响。问卷从10月1日起作为在线调查提供,2020年11月15日,2020年。52名受试者参加了(13名男子,39位女性,平均年龄47.3±15.5岁)。几乎一半的参与者(48%)经历了先前存在的症状恶化,44%的病例出现新的症状。最常见的恶化是步态和平衡问题(67%),疲劳(58%),焦虑(50%),抑郁症(50%)。70.8%的参与者报告说,由于长期延迟获得医疗护理(30%)和其他医疗保健团队(60%),HD的整体护理不适当。超过一半(54.2%)的参与者报告说,COVID-19大流行对他们的照顾者/家庭产生了负面影响。我们的研究结果强调了第一波COVID-19大流行对HD人群及其护理人员的医疗保健的负面影响。不仅一些症状加重,但是在大流行期间出现了新的症状。在未来,应考虑卫生政策,以改善对HD等罕见疾病患者的护理。
    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.
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