Conclusions: Calls to action for improving the life of MS patients and their families (original) (raw)
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Future MS care: a consensus statement of the MS in the 21st Century Steering Group
Journal of neurology, 2013
The ''MS in the 21st Century'' initiative was established with the purpose of (1) defining how multiple sclerosis (MS) treatment and standards of care should look in the 21st century; (2) developing a minimum standard of care across the world; and (3) motivating the broad MS community to align standards of care and challenge the current treatment paradigm. The aim was to develop a consensus statement to reach and influence the broader MS community. An expert steering group from Europe and Canada-consisting of neurologists, patient advocates, a pharmacoepidemiologist/pharmacoeconomist, and representatives from national MS centers-participated in a series of workshop-driven meetings between February 2011 and 2012. After three phases of discussions, the steering group identified that the overall vision for future care of MS should be full access to personalized treatment, with reimbursement, to achieve freedom from disease. They constructed seven overall principles that support this vision: personalized care, patient engagement, commitment to research, regulatory body education and reimbursement issues, new endpoints in clinical trials, more therapy options, and MS centers of excellence. This consensus statement outlines the key aspects of the seven principles that need to be addressed. The ''MS in the 21st Century
Rethinking MS in Europe: Prioritising Timely, Integrated Care for People with Multiple Sclerosis
2020
Background: Multiple Sclerosis (MS) is a progressive neurological disease that can lead to severe disability. It is one of the most prevalent causes of disability in young adults in the world. Over 1,000,000 people are affected across Europe. Management strategies include DMTs, symptomatic treatment and lifestyle interventions-all of which must be tailored to the individual with MS in order to be effective. The European Brain Council initiated in 2018 a project RETHINKING MS, calling for change in MS care. Method: The study’s research included data mapping, expert interviews and national roundtable discussions utilising the care pathway concept and the result of the literature search. The care pathway implies an integrated care framework. A series of clinical and patient-oriented benchmarks along the care process were developed, focusing on multidisciplinary, timely, integrated care as a key area which has been identified amongst the priorities for policy action to meet the needs of...
BMC Neurology
Background: Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide. Methods: In light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study. The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS. The innovative study design ("layer model") offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants. Discussion: The SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS.
The Swedish MS registry – clinical support tool and scientific resource
Acta Neurologica Scandinavica, 2015
The Swedish MS registry (SMSreg) is designed to assure quality health care for patients with multiple sclerosis (MS). It has been active since 2001 and web-based since 2004. It runs on government funding only and is used in all Swedish neurology departments. The SMSreg currently includes data on 14,500 of Sweden’s estimated 17,500 prevalent patients with MS. One important function of SMSreg, to which participation is voluntary, is to serve as a tool for decision support and to provide an easy overview of the patient information needed at clinical visits. This is its core feature and explains why the majority of Swedish MS specialists contribute data. Another success factor for SMSreg is that entered data can be readily accessed, either through a query function into Excel format or through a set of predesigned tables and diagrams in which parameters can be selected. Recent development includes a portal allowing patients to view a summary of their registered data and to report a set of patient reported outcomes. SMSreg data have been used in close to 100 published scientific reports. Current projects include an incidence cohort (EIMS), post-marketing cohorts of patients on novel disease modifying drugs (IMSE), and a prevalence cohort (GEMS). As these studies combine physical sampling and questionnaire data with clinical documentation and possible linkage to other public registries, together they provide an excellent platform for integrated MS research.
Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition
Multiple Sclerosis Journal
Background: High-quality epidemiologic data worldwide are needed to improve our understanding of disease risk, support health policy to meet the diverse needs of people with multiple sclerosis (MS) and support advocacy efforts. Objectives: The Atlas of MS is an open-source global compendium of data regarding the epidemiology of MS and the availability of resources for people with MS reported at country, regional and global levels. Methods: Country representatives reported epidemiologic data and their sources via survey between September 2019 and March 2020, covering prevalence and incidence in males, females and children, and age and MS type at diagnosis. Regional analyses and comparisons with 2013 data were conducted. Results: A total of 2.8 million people are estimated to live with MS worldwide (35.9 per 100,000 population). MS prevalence has increased in every world region since 2013 but gaps in prevalence estimates persist. The pooled incidence rate across 75 reporting countries...
Multiple Sclerosis International Federation: stimulating international cooperation in research
Neurology, 2013
The MS International Federation (MSIF), established in 1967, links the activities of over 85 national multiple sclerosis (MS) societies worldwide. Over those 45 years, and particularly in the last 20, it has seen dramatic changes in our understanding, treatment, and multidisciplinary management of people with MS. However, these advances are not universal and there are embarrassing discrepancies in the levels of treatment and care provided in different parts of the world. MSIF's research strategy is guided by an International Medical and Scientific Board composed of 70 experts in MS, nominated by our member organizations and incorporating an Executive Committee. Our strategy focuses on areas that might benefit from a global approach, those that are newly emerging, and those that are particularly challenging. We encourage young investigators to enter the field of MS research, and particularly support those from underdeveloped countries to facilitate transfer of knowledge and expertise from more “expert” areas. Our current portfolio focuses on progressive MS, pediatric MS, and stem cell therapy.
Multiple sclerosis and related disorders, 2017
Patient engagement is vital in multiple sclerosis (MS) in order to optimise outcomes for patients, society and healthcare systems. It is essential to involve all stakeholders in potential solutions, working in a multidisciplinary way to ensure that people with MS (PwMS) are included in shared decision-making and disease management. To start this process, a collaborative, open environment between PwMS and healthcare professionals (HCPs) is required so that similarities and disparities in the perception of key areas in patient care and unmet needs can be identified. With this patient-centred approach in mind, in 2016 the MS in the 21st Century Steering Group formed a unique collaboration to include PwMS in the Steering Group to provide a platform for the patient voice. The MS in the 21st Century initiative set out to foster engagement through a series of open-forum joint workshops. The aims of these workshops were: to identify similarities and disparities in the perception and priorit...
Rethinking MS in Europe: Prioritizing integrated services for people with multiple sclerosis
European journal of public health, 2020
The prioritized strategic actions embodied the definition of Budgetary Actions for the health area and linked the estimated amounts to a set of indicators. All production has generated the formation of a government staff with managerial capacity to strategic planning and evaluation as part of training teams trained by the government.
Intervening to reduce the risk of future disability from multiple sclerosis: are we there yet?
International Journal of Neuroscience, 2017
Disease-modifying therapies (DMTs) delay or may prevent the progression of patients with high-risk clinically isolated syndrome (CIS) to clinically definite multiple sclerosis (MS), and from relapsingremitting MS to secondary progressive MS. Current evidence on the effects of DMT on disability in MS is supported by the use of the Expanded Disability Status Scale (EDSS), which is dominated by ambulation, and usually used as a secondary outcome measure. Less is known about the long-term effects of DMTs on other aspects of functional status, particularly cognition, which is a key determinant of ability to work. The time scale for measurements of disability is at most a few years, with scant data from more than ten years of observation. Longer prospective follow-up of large numbers of patients with CIS is needed to determine whether early intervention with a DMT influences long-term disease progression. Finally, the emergence of the radiologically isolated syndrome (RIS) as a clinical entity has shifted the debate about when to intervene to an even earlier time frame. Balancing the significant side-effects associated with DMT in general and the expected outcome of pharmacologic intervention is increasingly problematic for managing patients with uncertain prognosis, as many patients may have low-risk CIS, benign MS or patients with RIS only. Preventing long-term disability in MS should be recognised more clearly as an important outcome in its own right, with disability measured more consistently with more sensitive instruments beyond the use of the EDSS.
Multiple sclerosis (Houndmills, Basingstoke, England), 2016
Multiple sclerosis (MS) is a highly heterogeneous disease, both in its course and in its response to treatments. Effective biomarkers may help predict disability progression and monitor patients' treatment responses. The aim of this review was to focus on how biomarkers may contribute to treatment individualisation in MS patients. This review reflects the content of presentations, polling results and discussions on the clinical perspective of MS during the first and second Pan-European MS Multi-stakeholder Colloquia in Brussels in May 2014 and 2015. In clinical practice, magnetic resonance imaging (MRI) measures play a significant role in the diagnosis and follow-up of MS patients. Together with clinical markers, the rate of MRI-visible lesion accrual once a patient has started treatment may also help to predict subsequent treatment responsiveness. In addition, several molecular (immunological, genetic) biomarkers have been established that may play a role in predictive models o...