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Epidemiology, Biostatistics and Prevention Institute

Swiss MS Registry: Supply and Demand of MS Care

To date MS cannot be cured, but treatments are available to slow disease progression and to reduce the number of acute symptom onsets. Although
guidelines recommend a rapid initiation of immunomodulatory treatment upon MS diagnosis, studies abroad have found that as many as 25% of eligible MS patients refuse standard immunomodulatory therapy. The reasons are manifold, but may include access barriers to care, cognitive or psychological impairments, or lack of trust in care providers and/or conventional medicine. In Switzerland, the extent of
this problem, as well as reasons for possible underuse of treatment and specialized MS care, is unknown. The recently established Swiss MS Registry (SMSR) and the Swiss MS Cohort Study (SMSC) offer unique opportunities to study the phenomenon of treatment refusal among MS patients in Switzerland. In this collaborative project, treatment refusers (i.e., patients who do not receive recommended treatment and/or specialized MS care) will be characterized, the use of alternative or complementary strategies will be examined (e.g. symptomatic therapies), and outcomes reflecting
MS progression and health-related quality of life will be compared between treatment adherers and refusers. The results of this project will promote our understanding of why some MS patients refuse treatment, who they are, and whether this represents true underuse of care. The knowledge gained will allow the Swiss MS Society
and clinicians involved in MS care to develop strategies for corrective actions
(e.g. better treatment support) and to tackle potential care access barriers.


For more information and to participate please visit the project page.