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How to Develop the Highest Possible Leading-edge Interdisciplinary Care Model for People With MS, That Will be Relevant to All Stakeholders and Declinable to Different Local Contexts With the Ultimate Goal of Ensuring the Highest Level of Quality of Care in MS.

Sponsor: Assistance Publique - Hôpitaux de Paris

Summary

Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating and degenerative disease of the central nervous system. It is currently not curable, although several disease-modifying treatments (DMT) reduce the occurrence of relapses and slow disability progression. It affects about 2.8 million persons worldwide (1 million in Europe) with 3 women per 1 man. MS usually starts between 20 and 40 years old, and most people live with the disease for several decades, as life expectancy is reduced by 6-13 years compared to general population. Disease courses are highly heterogeneous and unpredictable at individual level. MS may lead to limited walking abilities but also to invisible symptoms: cognitive dysfunction, pain, bladder dysfunction, and fatigue. This results in a very high burden on affected persons, their families and society. Overall costs among 30 European countries were evaluated in 2010 to 14.559 million euros. The chronic nature of MS implies a high level of use of health services during the entire life span. MS-specific therapeutic options have undergone extensive development since the 2000s, as well as the understanding of the usefulness of comprehensive MS care. The usual core component of MS care is the neurologist/general practitioner (GP) dyad, and only neurologists are allowed to prescribe MS-specific DMT. With the expanding therapeutic area (and the required strategies to prevent and minimize the risks of adverse events) combined with the heterogeneity of the course and the symptoms, it is more and more difficult for a single physician to acquire and maintain the expertise necessary to comply with gold standard care. Patients may also need referrals to other specialists (physiotherapists, neuropsychologists, psychiatrists, occupational therapists…) depending on their needs. They sometimes use the terms "labyrinth" or "obstacle course" to describe the complex, non-linear, multi-professionals' pathway they are facing. In the past years, the concept of multidisciplinary MSCU emerged as an organisational innovation, and structures were established at different scales in several countries. These teams available in a single place provide the high level of expertise needed for complex cases or specific steps of the care process. They also dispense formalized diagnostic procedures, protocols for initiation and follow-up of DMT. Their organisation can vary across regions and healthcare systems and needs to be balanced with clinical practice according to local conditions. Thus, there are about 2450 neurologists (67% in public hospitals, 33% private practice) in France, and 23 MS expert centres were labeled by the Ministry of Health in 2017 (one per region, systematically in university public hospitals). In Italy, there are approximately 8000 neurologists and 240 MS centres of varying size, often located within neurology departments in public hospitals. The ability to coordinate interdisciplinary care in each MS centre depends on the capacity and quality of the local health and social care system. The presence of such a new actor in MS management leads to new questions regarding its role and place in the pre-existing system, and how the previous actors (mainly general neurologists, GP, people with MS) accept or use it. To date, little is known on the impact of MSCU on integrated care and personalized approach. Therefore, it is crucial to understand how key stakeholders, such as health professionals, payers and people affected by MS perceive this new and innovative element of the care pathway.

Official title: MUltiple Sclerosis, How to Instigate Care integrAtion Across nationaL Contexts Via patIentS' Engagement?

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