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Modelling Disease Progression of Multiple Sclerosis in a South Wales Cohort. 南威尔士队列中多发性硬化症的疾病进展模型。
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-01-01 Epub Date: 2024-02-20 DOI: 10.1159/000536427
Emeka C Uzochukwu, Katharine E Harding, James Hrastelj, Karim L Kreft, Peter Holmans, Neil P Robertson, Emma C Tallantyre, Michael Lawton

Objectives: The objective of this study was to model multiple sclerosis (MS) disease progression and compare disease trajectories by sex, age of onset, and year of diagnosis.

Study design and setting: Longitudinal EDSS scores (20,854 observations) were collected for 1,787 relapse-onset MS patients at MS clinics in South Wales and modelled using a multilevel model (MLM). The MLM adjusted for covariates (sex, age of onset, year of diagnosis, and disease-modifying treatments), and included interactions between baseline covariates and time variables.

Results: The optimal model was truncated at 30 years after disease onset and excluded EDSS recorded within 3 months of relapse. As expected, older age of onset was associated with faster disease progression at 15 years (effect size (ES): 0.75; CI: 0.63, 0.86; p: <0.001) and female-sex progressed more slowly at 15 years (ES: -0.43; CI: -0.68, -0.18; p: <0.001). Patients diagnosed more recently (defined as 2007-2011 and >2011) progressed more slowly than those diagnosed historically (<2006); (ES: -0.46; CI: -0.75, -0.16; p: 0.006) and (ES: -0.95; CI: -1.20, -0.70; p: <0.001), respectively.

Conclusion: We present a novel model of MS outcomes, accounting for the non-linear trajectory of MS and effects of baseline covariates, validating well-known risk factors (sex and age of onset) associated with disease progression. Also, patients diagnosed more recently progressed more slowly than those diagnosed historically.

研究目的建立多发性硬化症(MS)疾病进展模型,并比较不同性别、发病年龄和诊断年份的疾病轨迹:自1985年以来,在南威尔士的多发性硬化症诊所收集了复发多发性硬化症患者的纵向EDSS评分,并使用多层次模型(MLM)进行建模。多层次模型调整了基线协变量(性别、发病年龄、诊断年份和疾病修饰治疗(DMT)),并包括基线协变量和时间变量之间的交互作用:最佳模型以发病后 30 年为截断点,并排除了复发后 3 个月内的 EDSS 记录。不出所料,发病年龄越大,15 年后疾病进展越快(效应大小 (ES): 0.75; CI: 0.63, 0.86; P: 2011):我们提出了一个新的多发性硬化症预后模型,该模型考虑了多发性硬化症的非线性轨迹和基线协变量的影响,验证了与疾病进展相关的众所周知的风险因素(性别和发病年龄)。此外,近期确诊的患者比历史上确诊的患者进展更慢。
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引用次数: 0
Prevalence, Incidence, and Mortality of Multiple Sclerosis in Coimbra, Portugal. 葡萄牙科英布拉多发性硬化症的患病率、发病率和死亡率。
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-01-01 Epub Date: 2023-12-21 DOI: 10.1159/000535960
Inês Correia, Carolina Cunha, Catarina Bernardes, Carla Nunes, Carmo Macário, Lívia Sousa, Sónia Batista

Multiple sclerosis (MS) is the most common chronic inflammatory, demyelinating, and neurodegenerative disease of the central nervous system in young adults, representing the leading cause of nontraumatic disability in this population. The rising prevalence of MS worldwide makes it critical to recognize the absolute number of patients with MS, demanding the execution of a sustainable healthcare policy. In Portugal, only six studies evaluating MS rates were published, disclosing a prevalence of 64 cases per 100,000 persons and an incidence of 3.1 cases per 100,000 persons/year, but the mortality rates have not been reported. Thus, this observational, cross-sectional study aimed to assess MS prevalence, incidence, and mortality in the city of Coimbra, a region in the center of Portugal. Patients who fulfilled McDonald's Diagnosis Criteria (2017) for MS were recruited. Inclusion criteria were defined according to prevalence, incidence, and mortality studies. The baseline demographic and clinical characterization of the prevalence study population was performed. The MS prevalence rate in Coimbra was 143.45 cases per 100,000 inhabitants. Between 2018 and 2021, the cumulative incidence was 8.52 new cases per 100,000 persons/year. The mortality rate between 2018 and 2021 was 2.84 deaths per 100,000 inhabitants. MS prevalence and incidence in Coimbra are higher than reported in previous similar studies and comparable to Europe's mean prevalence and incidence.

多发性硬化症(MS)是青壮年中枢神经系统最常见的慢性炎症、脱髓鞘和神经退行性疾病,是导致该人群非创伤性残疾的主要原因。多发性硬化症在全球的发病率不断上升,因此必须认识到多发性硬化症患者的绝对数量,这就要求执行可持续的医疗保健政策。在葡萄牙,仅发表了六项评估多发性硬化症发病率的研究,披露了每 10 万人中 56 例的患病率和每年每 10 万人中 3.1 例的发病率,但未报告死亡率。因此,这项横断面观察性研究旨在评估葡萄牙中部地区科英布拉市的多发性硬化症患病率、发病率和死亡率。研究招募了符合麦克唐纳多发性硬化症诊断标准(2017 年)的患者。纳入标准是根据患病率、发病率和死亡率研究确定的。对流行率研究人群进行了基线人口统计学和临床特征描述。科英布拉的多发性硬化症患病率为每 10 万居民 143.45 例。2018 年至 2021 年期间,累计发病率为每 10 万人/年新增病例 8.52 例。2018 年至 2021 年期间的死亡率为每 10 万居民 2.84 例死亡。科英布拉的多发性硬化症患病率和发病率高于以往类似研究的报告,与欧洲的平均患病率和发病率相当。
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引用次数: 0
Sleep Disorders and Sleep Disturbances in Persons with Multiple Sclerosis: A Population-Based Matched Case-Control Study in Denmark. 多发性硬化症患者的睡眠障碍和睡眠紊乱:丹麦一项基于人群的匹配病例对照研究。
IF 3.2 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-01-01 Epub Date: 2024-03-21 DOI: 10.1159/000538307
Elisabeth Framke, Poul Jørgen Jennum, Lau Caspar Thygesen, Melinda Magyari

Introduction: Adverse sleep is common in multiple sclerosis (MS). Population-based studies including adequate control groups are lacking. We hypothesized that the prevalence of sleep disorders and other sleep disturbances would be higher in persons with MS than in controls.

Methods: We conducted a population-based study linking individual-level data from the Danish MS Registry (n = 21,943 persons with MS) and the Danish Population Registry (n = 109,715 matched controls) with information on sleep disorders from the Danish National Patient Registry and other sleep disturbances assessed by dispensed prescription drugs from the Danish National Prescription Registry.

Results: Prevalence of diagnosed sleep disorders in terms of central hypersomnia (0.15% vs. 0.06%), sleep disturbances (1.05% vs. 0.70%), and sleep movements (0.22% vs. 0.13%) and other sleep disturbances identified by dispensed central acting (10.73% vs. 1.10%) and hypnotic use (30.65% vs. 20.13%) medication was statistically significantly higher among persons with MS when compared to controls. We found no statistically significant difference in the prevalence of sleep apnea and parasomnia between groups. Stratified by sex and age at MS diagnosis, results for differences between persons with MS and controls were similar.

Conclusion: In this registry-based study, we found that the prevalence of several diagnosed sleep disorders was higher in persons with MS than in controls, that is, those reflecting insomnia and daytime symptoms including hypersomnia. Other sleep disturbances identified by dispensed prescription medication were markedly higher in persons with MS than in controls.

导言 多发性硬化症(MS)患者的不良睡眠很常见。目前还缺乏包括适当对照组在内的人群研究。我们假设,多发性硬化症患者的睡眠障碍和其他睡眠紊乱的患病率将高于对照组。方法 我们进行了一项基于人群的研究,将丹麦多发性硬化症登记处(21943 名多发性硬化症患者)和丹麦人口登记处(109715 名匹配对照组)的个人数据与丹麦全国患者登记处的睡眠障碍信息和丹麦全国处方登记处的处方药评估的其他睡眠障碍信息联系起来。结果 与对照组相比,多发性硬化症患者经诊断患有中枢性嗜睡(0.15% vs. 0.06%)、睡眠障碍(1.05% vs. 0.70%)和睡眠运动(0.22% vs. 0.13%)等睡眠障碍,以及通过配发中枢性作用药物(10.73% vs. 1.10%)和催眠药(30.65% vs. 20.13%)确定的其他睡眠障碍的患病率在统计学上明显更高。我们发现,睡眠呼吸暂停和寄生虫性失眠的患病率在不同组别之间没有明显的统计学差异。根据多发性硬化症诊断时的性别和年龄进行分层,多发性硬化症患者与对照组之间的差异结果相似。结论 在这项以登记为基础的研究中,我们发现多发性硬化症患者中几种确诊睡眠障碍的患病率高于对照组,即那些反映失眠和白天症状(包括嗜睡症)的睡眠障碍。与对照组相比,多发性硬化症患者通过配药处方发现的其他睡眠障碍也明显较高。
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引用次数: 0
Economic Burden of Huntington’s Disease in China: Results from a National Wide Cross-Sectional Study 中国亨廷顿氏病的经济负担:一项全国性横断面研究的结果
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-12-22 DOI: 10.1159/000534564
Shanquan Chen, Huanyu Zhang, Jiazhou Yu, Xi Cao, Shuyang Zhang, Dong Dong
Background: Huntington's disease (HD) poses a significant socio-economic burden globally. Existing research on HD’s economic burden predominantly comes from Western settings, leaving a gap in data from Asian countries. This study aims to assess the economic burden of HD in China and identify cost-driving factors.Methods: This study used data from a 2019 nationwide cross-sectional survey of individuals affected by rare diseases in China. Data included socio-demographic characteristics, income, disease stage, health and social insurance coverage status, treatment-seeking behaviour, and costs. Logistic regression and linear regression were used to explore potential contributors to treatment-seeking behaviour and associated costs.Results: Of the 269 individuals with HD included in this study, 80.6% were actively seeking treatment. The average annual direct medical cost, direct non-medical cost, and indirect cost was 3265.65, 805.82, and 801.97 Euros, respectively. Compared to participants with early-stage HD, those with middle- or advanced-stage HD reported higher direct medical costs (coefficient 1612.70, 95% CI [141.92, 3083.48] and 2398.58, 95%CI [791.16, 4006.00], respectively). However, the disease stage was not significantly associated with direct non-medical costs or indirect costs. Conclusions: This study provides crucial insights into the economic burden of HD in China. It emphasises a need for targeted policies that better cater to the financial needs of HD patients.
背景:亨廷顿氏病(HD)给全球造成了巨大的社会经济负担。有关 HD 经济负担的现有研究主要来自西方国家,亚洲国家的数据尚属空白。本研究旨在评估中国 HD 的经济负担,并确定导致成本增加的因素:本研究使用了 2019 年中国罕见病患者全国横断面调查的数据。数据包括社会人口学特征、收入、疾病分期、医疗和社会保险覆盖状况、求医行为和费用。我们采用逻辑回归和线性回归的方法来探讨导致寻求治疗行为和相关费用的潜在因素:本研究共纳入 269 名 HD 患者,其中 80.6% 积极寻求治疗。平均每年的直接医疗费用、直接非医疗费用和间接费用分别为 3265.65 欧元、805.82 欧元和 801.97 欧元。与早期 HD 患者相比,中期或晚期 HD 患者的直接医疗费用更高(系数分别为 1612.70,95%CI [141.92,3083.48] 和 2398.58,95%CI [791.16,4006.00])。然而,疾病分期与直接非医疗费用或间接费用并无明显关联。结论本研究为了解中国 HD 的经济负担提供了重要依据。它强调需要制定有针对性的政策,以更好地满足 HD 患者的经济需求。
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引用次数: 0
Knowledge of day and time contact preferences assists in successful telephone follow-up 了解联系人的时间偏好有助于成功开展电话跟进工作
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-12-06 DOI: 10.1159/000535639
Olivia Brancatisano, Megan Reyneke, Jan Cameron, M. Kilkenny, Dawn Harris, Natasha A. Lannin, D. Cadilhac
Objectives: There is limited evidence as to whether knowing a participant’s contact preferences improves completion of telephone assessments in clinical trials. We examined i) participants’ preferences for telephone contact and these preferences related to day and time of actual contact; ii) the number of contact attempts to successfully complete telephone assessments; iii) the association between participant characteristics and successful telephone contacts. Materials and Methods: A prospective observational study nested within the Recovery-focused Community support to Avoid readmissions and improve participant after Stroke (ReCAPS) trial was undertaken. Information was collected on preferences (set days of the week, any weekday, morning, afternoon, evening, anytime) for assessment calls at 3 months post randomization. Descriptive statistics and logistic regression were used. Results: Of the 232 participants (average age 66 years, 69% male), 59% preferred calls on any weekday. Wednesday (26%) and Monday (21%) and mornings (49%) were preferred. Approximately 70% of telephone calls were completed within three contact attempts. Approximately 60% of all calls were completed on participants’ preferred day and time. There was no association between participant characteristics (sex, age, employment status, and living alone) and the number of contact attempts made for the telephone call assessment. There were no participant characteristics associated with the successful completion of assessments on participants’ preferred time/day.Conclusions: We provide new evidence, based on a case study in stroke, highlighting the importance of knowing a participant’s preferred contact day and time for the timely completion of assessments via telephone call.
目的:了解参与者的联系偏好是否能提高临床试验中电话评估的完成度,这方面的证据有限。我们检查了i)参与者对电话联系的偏好以及这些偏好与实际联系的日期和时间有关;Ii)成功完成电话评估的联系次数;Iii)参与者特征与成功电话联系之间的关联。材料和方法:一项前瞻性观察研究嵌套在康复为重点的社区支持,以避免卒中后再入院和改善参与者(ReCAPS)试验中进行。在随机分组后3个月,收集偏好信息(一周的固定日期、工作日的任何一天、上午、下午、晚上、任何时间),用于评估电话。采用描述性统计和逻辑回归。结果:在232名参与者中(平均年龄66岁,69%为男性),59%的人喜欢在工作日打电话。周三(26%)、周一(21%)和上午(49%)更受欢迎。大约70%的电话在三次联系内完成。大约60%的电话是在参与者喜欢的日期和时间完成的。参与者特征(性别、年龄、就业状况和独居)与电话评估中尝试联系的次数之间没有关联。没有参与者的特征与成功完成参与者的首选时间/天的评估相关。结论:我们提供了新的证据,基于一个中风的案例研究,强调了了解参与者的首选接触日期和时间对于通过电话及时完成评估的重要性。
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引用次数: 0
Contents Vol. 57 2023 目录 第 57 卷 2023
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-12-01 DOI: 10.1159/000535313
Valery L Feigin, Derrick A. Bennett, Deidre Anne De, Singapor Singapor Silva – National Neuroscience Institute, G. Logroscino, Akshay Anand, Hugo J. Aparicio, S. Barker-Collo, James L. Fisher, Gary M. Franklin, Anthony J. Hannan, G. J. Hankey, Spencer James, Carlos N. Ketzoian – Montevideo, Sue Min Lai, Elan D. Louis, Peter M. Rothwell – John, Oxford UK Radcliffe Hospital, Ralph L Sacco, W. Geisinger, H. ThomasTruelsen–, AS Lundbeck, Copenhagen, Denmark, David O. Wiebers – Mayo, Clinic Mayo, Foundation, J. Sydney, H.-L. Lin, F.-C. Sung, C.-H. Muo, P.-C. Chen, C. Pantoja-Ruiz, F. Porto, M. Parra-Artunduaga, L. Omaña-Alvarez, J. Coral, Bogotá
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引用次数: 0
Expert Discussion Pragmatic Solutions to reduce global stroke burden: World Stroke Organisation- Lancet Neurology Commission Report 专家讨论 减轻全球中风负担的务实解决方案:世界卒中组织-柳叶刀神经病学委员会报告
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-11-23 DOI: 10.1159/000535377
R. Krishnamurthi, Seana Gall, Sheila O. Martins, Bo Norrving, Jeyaraj D. Pandian, Valery L Feigin, M. Owolabi
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引用次数: 0
Acknowledgements to Referees 对推荐人的感谢
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-02-10 DOI: 10.1159/000527845

Neuroepidemiology 2022;56:469–471
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引用次数: 0
Contents Vol. 56, 2022 目录第56卷,2022年
IF 5.7 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-02-01 DOI: 10.1159/000528411
D. A. D. Silva
s 8th International Conference on Neurology and Epidemiology (ICNE) Virtual Conference, March 30 – April 1, 2022 Guest Editors: V.L. Feigin, Auckland, New Zealand
第八届国际神经病学和流行病学会议(ICNE)虚拟会议,2022年3月30日至4月1日客座编辑:V.L.Feigin,新西兰奥克兰
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引用次数: 0
Effects of Eligibility Criteria on Patient Selection and Treatment Implications from 10 Multidomain Dementia Prevention Trials: A Population-Based Study. 资格标准对患者选择的影响以及 10 项多领域痴呆症预防试验的治疗意义:基于人群的研究
IF 3.2 3区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-01-01 Epub Date: 2022-11-17 DOI: 10.1159/000528120
Silvan Licher, Frank J Wolters, Jelena Pavlović, Maryam Kavousi, Maarten J G Leening, M Kamran Ikram, M Arfan Ikram

Introduction: Dementia prevention trials have so far shown little benefit of multidomain interventions against cognitive decline. Recruitment strategies in these trials often centre around dementia risk or cardiovascular risk profile, but it is uncertain whether this leads to inclusion of individuals who may benefit most from the intervention. We determined the effects of eligibility criteria on the recruitment of potential trial participants in the general population.

Methods: In a systematic search until January 1, 2022, we identified all published and ongoing large (≥500 participants), phase-3 multidomain trials for the prevention of cognitive decline or dementia. We applied trial eligibility criteria to 5,381 participants of the population-based Rotterdam Study (mean age: 72 years, 58% women), to compare participant characteristics, predicted risk of cardiovascular disease, and dementia risk, between trial eligible and ineligible persons.

Results: We identified 10 trials, of which 5 had been published (DR's EXTRA, FINGER, preDIVA, MAPT, and HATICE) and 5 are ongoing (US-POINTER, MIND-CHINA, MYB, AgeWell.de, and J-Mint). Among all Rotterdam Study participants, eligibility across published trials ranged from 48% for MAPT to 87% for preDIVA, in line with original trial reports. Variability in eligibility was wider for ongoing trials, from 1% for US-POINTER to over 94% for MYB trial. Over 70% of trial eligible individuals are recommended preventive intervention in routine care based on their cardiovascular risk, similar for lipid-lowering (71%) and blood pressure-lowering treatment (73%). Ten-year risks of dementia were similar for eligible compared to ineligible individuals (12 vs. 11%).

Conclusion: Multidomain dementia prevention trials fail to preferentially include those at the highest risk of dementia and mostly include individuals who qualify for interventions already on the basis of cardiovascular prevention guidelines. These findings call for better targeted enrolment of individuals for whom trial results can improve clinical decision-making.

简介迄今为止,痴呆症预防试验表明,多领域干预对认知能力下降的益处不大。这些试验的招募策略通常以痴呆风险或心血管风险概况为中心,但目前尚不确定这是否会导致纳入可能从干预措施中获益最多的人群。我们确定了资格标准对普通人群中潜在试验参与者招募的影响:在截至 2022 年 1 月 1 日的系统检索中,我们确定了所有已发表和正在进行的预防认知功能下降或痴呆症的大型(≥ 500 人参与)第三阶段多领域试验。我们对基于人群的鹿特丹研究的5381名参与者(平均年龄:72岁,58%为女性)采用了试验资格标准,以比较符合试验资格和不符合试验资格者的参与者特征、心血管疾病预测风险和痴呆风险:我们确定了 10 项试验,其中 5 项已经发表(DR's EXTRA、FINGER、preDIVA、MAPT 和 HATICE),5 项正在进行(US-POINTER、MIND-CHINA、MYB、AgeWell.de 和 J-Mint)。在鹿特丹研究的所有参与者中,已发表试验的合格率从MAPT的48%到preDIVA的87%不等,与原始试验报告一致。正在进行的试验的合格率差异更大,从US-POINTER试验的1%到MYB试验的94%。超过70%的符合试验条件的人根据其心血管风险在常规护理中被推荐进行预防性干预,降脂治疗(71%)和降压治疗(73%)的比例类似。符合条件者与不符合条件者的十年痴呆风险相似(12% 对 11%):结论:多领域痴呆症预防试验未能优先纳入痴呆症风险最高的人群,而大多纳入了根据心血管预防指南已经符合干预条件的人群。这些研究结果要求更好地有针对性地纳入试验结果可改善临床决策的人群。
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引用次数: 0
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Neuroepidemiology
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