Author Of 3 Presentations
P0435 - Atlas of MS third edition: Methodology for evaluating the validity of country-specific epidemiology data (ID 730)
Abstract
Background
Background The Multiple Sclerosis International Federation (MSIF) Atlas of MS is the most extensive worldwide study of the epidemiology of MS and the global availability and accessibility of resources for people with MS. Findings from the 2008 and 2013 editions have been widely cited by the global MS research, advocacy, and policy communities.
Objectives
Objectives To enhance the robustness of worldwide prevalence estimates for MS, confidence indexing and methodology have been introduced to the Atlas of MS third edition.
Methods
Methods Between September 2019 and March 2020, country coordinators completed a questionnaire to report the most recent epidemiologic data available about MS in their country. The questionnaire was available in multiple formats and languages (i.e., English, French, and Spanish). Country coordinators provided sources for prevalence, incidence, mean age of onset, and type of disease course. A confidence tool was designed to assess the strength of each data source, rating them as either very low, low, moderate, or high. The factors included in the confidence tool were population size, year of data collection, type of data source, MS diagnostic criteria used, number of sources included, peer-review process, and validation efforts. An estimated MS prevalence was imputed for countries unable to provide a prevalence estimate. These prevalence estimates were developed through a literature review and imputing a prevalence estimate with the Global Health Data Exchange sub-region average.
Results
Results Of 115 reporting countries, 94 (81.7%) countries provided details of the evidence used to obtain the country’s prevalence estimate. Source types included academic papers (61), patient register or cohort (45), government/health service statistics (23), electronic medical records (39), administrative datasets (4), or opinion (39). The prevalence source used for sixty-five percent of countries was rated moderate or high quality. On average, prevalence sources scored higher on the confidence tool than sources providing incidence and other epidemiological data.
Conclusions
Conclusions Using a confidence tool may increase researchers’ ability to interpret epidemiology data and compare findings across countries and regions.
P0436 - Atlas of MS third edition: Worldwide incidence and clinical features of MS (ID 728)
Abstract
Background
Background The Multiple Sclerosis International Federation (MSIF) Atlas of MS is the most extensive worldwide study of the epidemiology and initial clinical features of MS and the global availability and accessibility of resources for people with MS. Findings from the 2008 and 2013 editions have been widely cited by the global MS research, advocacy, and policy communities.
Objectives
Objectives This analysis aims to provide a greater understanding of the epidemiology of MS worldwide. Valid data regarding the global distribution of MS and characteristics of disease presentation will enhance research and enable decision makers to improve healthcare policy and allocate resources to better meet the needs of people with MS, their caregivers, and families.
Methods
Methods Between September 2019 and March 2020, country coordinators completed a questionnaire to report the most recent epidemiologic data available about MS in their country. The questionnaire was available in multiple formats and languages (i.e., English, French, and Spanish). Survey questions included country-specific prevalence and incidence rates (overall, by sex, and pediatric), mean age of MS onset, disease course (at presentation and currently), and type of clinical criteria used for MS diagnosis.
Results
Results Data were gathered from 115 countries, accounting for 87% of the world population. The incidence rate among countries reporting this data (n=75) was 2.1 per 100,000 persons per year (0.01-33). Incidence rates were highest in the European region (6.8) and lowest amongst the African (0.4) and South-East Asian regions (0.4). The average age of MS diagnosis was 32 years. At the time of diagnosis, on average, 85% of individuals had relapsing-remitting MS. Females represented sixty-nine percent of all MS cases.
Conclusions
Conclusions The Atlas of MS provides a comprehensive look at the epidemiologic data of MS around the world. While the rate of MS cases varies by region, patient characteristics are similar. Little variation is seen between countries regarding mean age of MS onset and percentage of patients with relapsing- remitting MS.
P0437 - Atlas of MS third edition: Worldwide prevalence of multiple sclerosis (ID 724)
Abstract
Background
Background The Atlas of MS is the most extensive worldwide study of the epidemiology of MS and the global availability and accessibility of resources for people with MS. Findings from the 2008 and 2013 editions have been widely cited by the global MS research, advocacy, and policy communities.
Objectives
Objectives The third edition of the Atlas of MS aimed to gather more comprehensive data regarding the global prevalence of MS. Valid data regarding the worldwide distribution of MS will enable decision makers to improve healthcare policy and allocate resources to better meet the needs of people with MS, their caregivers, and families.
Methods
Methods Between September 2019 and March 2020, country coordinators completed a questionnaire to report the most recent epidemiologic data available about MS in their country. The questionnaire was available in multiple formats and languages (i.e., English, French, and Spanish). Country coordinators were encouraged to work with appropriate experts to gather data and were asked to provide information on data sources where possible. The global prevalence estimate was calculated using either the country-provided data or an imputed value calculated from available reported data. Countries were grouped into the six World Health Organization (WHO) regions and the four World Bank income levels for analysis.
Results
Results Data were gathered from 115 countries (104 provided prevalence), accounting for 87% of the world population. The estimated MS prevalence among the participating countries ranged from less than 1 up to 337 per 100,000 persons. Using imputed estimates for countries without data, the estimated number of people living with MS worldwide is 2.8 million (prevalence = 35.9), an increase of 470,000 from the 2013 estimate. The European (133.0) and American (111.7) regions had the highest overall prevalence estimates, while the African (5.3) and Western Pacific (4.8) had the lowest. High income level countries reported higher prevalence estimates compared to countries with lower income levels.
Conclusions
Conclusions The worldwide number of people with MS has increased by at least 20% since the 2013 estimate of 2.3 million. Reasons for the increase are not known, but likely include population growth, improved reporting, increased MRI availability, earlier diagnosis and longer survival. It is likely that the prevalence estimate is an underestimate of the actual prevalence of MS worldwide because there is poor or limited surveillance data in many countries.