NeuroepidemiologyPub Date : 2024-01-01Epub Date: 2024-02-20DOI: 10.1159/000536427
Emeka C Uzochukwu, Katharine E Harding, James Hrastelj, Karim L Kreft, Peter Holmans, Neil P Robertson, Emma C Tallantyre, Michael Lawton
{"title":"Modelling Disease Progression of Multiple Sclerosis in a South Wales Cohort.","authors":"Emeka C Uzochukwu, Katharine E Harding, James Hrastelj, Karim L Kreft, Peter Holmans, Neil P Robertson, Emma C Tallantyre, Michael Lawton","doi":"10.1159/000536427","DOIUrl":"10.1159/000536427","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Study design and setting: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":" ","pages":"218-226"},"PeriodicalIF":5.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11151968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914022","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Prevalence, Incidence, and Mortality of Multiple Sclerosis in Coimbra, Portugal.","authors":"Inês Correia, Carolina Cunha, Catarina Bernardes, Carla Nunes, Carmo Macário, Lívia Sousa, Sónia Batista","doi":"10.1159/000535960","DOIUrl":"10.1159/000535960","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":" ","pages":"57-63"},"PeriodicalIF":5.7,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10857021/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138833045","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
NeuroepidemiologyPub Date : 2024-01-01Epub Date: 2024-03-21DOI: 10.1159/000538307
Elisabeth Framke, Poul Jørgen Jennum, Lau Caspar Thygesen, Melinda Magyari
{"title":"Sleep Disorders and Sleep Disturbances in Persons with Multiple Sclerosis: A Population-Based Matched Case-Control Study in Denmark.","authors":"Elisabeth Framke, Poul Jørgen Jennum, Lau Caspar Thygesen, Melinda Magyari","doi":"10.1159/000538307","DOIUrl":"10.1159/000538307","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":" ","pages":"335-341"},"PeriodicalIF":3.2,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140186327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Economic Burden of Huntington’s Disease in China: Results from a National Wide Cross-Sectional Study","authors":"Shanquan Chen, Huanyu Zhang, Jiazhou Yu, Xi Cao, Shuyang Zhang, Dong Dong","doi":"10.1159/000534564","DOIUrl":"https://doi.org/10.1159/000534564","url":null,"abstract":"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.\u0000Methods: 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.\u0000Results: 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. \u0000Conclusions: 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.","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"62 9","pages":""},"PeriodicalIF":5.7,"publicationDate":"2023-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138945623","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Olivia Brancatisano, Megan Reyneke, Jan Cameron, M. Kilkenny, Dawn Harris, Natasha A. Lannin, D. Cadilhac
{"title":"Knowledge of day and time contact preferences assists in successful telephone follow-up","authors":"Olivia Brancatisano, Megan Reyneke, Jan Cameron, M. Kilkenny, Dawn Harris, Natasha A. Lannin, D. Cadilhac","doi":"10.1159/000535639","DOIUrl":"https://doi.org/10.1159/000535639","url":null,"abstract":"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. \u0000Materials 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. \u0000Results: 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.\u0000Conclusions: 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.","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"43 3","pages":""},"PeriodicalIF":5.7,"publicationDate":"2023-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138597560","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
{"title":"Contents Vol. 57 2023","authors":"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","doi":"10.1159/000535313","DOIUrl":"https://doi.org/10.1159/000535313","url":null,"abstract":"","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"13 5","pages":"I - VI"},"PeriodicalIF":5.7,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139015841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
R. Krishnamurthi, Seana Gall, Sheila O. Martins, Bo Norrving, Jeyaraj D. Pandian, Valery L Feigin, M. Owolabi
{"title":"Expert Discussion Pragmatic Solutions to reduce global stroke burden: World Stroke Organisation- Lancet Neurology Commission Report","authors":"R. Krishnamurthi, Seana Gall, Sheila O. Martins, Bo Norrving, Jeyaraj D. Pandian, Valery L Feigin, M. Owolabi","doi":"10.1159/000535377","DOIUrl":"https://doi.org/10.1159/000535377","url":null,"abstract":"","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"30 1","pages":""},"PeriodicalIF":5.7,"publicationDate":"2023-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139244983","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Contents Vol. 56, 2022","authors":"D. A. D. Silva","doi":"10.1159/000528411","DOIUrl":"https://doi.org/10.1159/000528411","url":null,"abstract":"s 8th International Conference on Neurology and Epidemiology (ICNE) Virtual Conference, March 30 – April 1, 2022 Guest Editors: V.L. Feigin, Auckland, New Zealand","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"56 1","pages":"I - VI"},"PeriodicalIF":5.7,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44549862","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
NeuroepidemiologyPub Date : 2023-01-01Epub Date: 2022-11-17DOI: 10.1159/000528120
Silvan Licher, Frank J Wolters, Jelena Pavlović, Maryam Kavousi, Maarten J G Leening, M Kamran Ikram, M Arfan Ikram
{"title":"Effects of Eligibility Criteria on Patient Selection and Treatment Implications from 10 Multidomain Dementia Prevention Trials: A Population-Based Study.","authors":"Silvan Licher, Frank J Wolters, Jelena Pavlović, Maryam Kavousi, Maarten J G Leening, M Kamran Ikram, M Arfan Ikram","doi":"10.1159/000528120","DOIUrl":"10.1159/000528120","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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%).</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":54730,"journal":{"name":"Neuroepidemiology","volume":"57 1","pages":"14-24"},"PeriodicalIF":3.2,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10064383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9296478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}