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.

MUSICALISE will help to better understand what is covered by the MSCU concept and what its impacts are in terms of quality of care and care integration. Case studies will be performed in France and Italy, as these two countries have implemented MSCU in different ways. Indeed, the French Ministry of Health has chosen to label regional MS-expert centers, i.e. 23 over the French territory to answer potential needs of about 120,000 patients with MS. In Italy, a different strategy was operated with more than 240 MS centres across the country and around 87% of people with MS (of about 137,000) receive care in these centres. Such choices imply differential use of MSCU, and possibly differential impacts, which will be assessed and measured in the present project. In-depth analysis will be performed in these two pilot countries, with comparisons both between and within countries. In addition, the European Charcot Foundation, collaborator in this project, is currently performing an international survey on MSCU and their implementation in different countries. The data gathered with this survey will be made available to us and will reinforce our understanding on how MS care is delivered and received in different contexts and different countries. This additional data provision will allow us to extend the analysis and leverage our propositions. The overall objective of MUSICALISE is to develop the highest possible leading-edge interdisciplinary care model that optimizes the integration of care for people living with MS, and therefore the overall quality of care. There is a crucial need for advancing research about MS management and care models, specifying the role and impacts of MSCU to assess its sustainability. Furthermore, the proposed model will be co-constructed to be relevant and declinable in different contexts and answer needs from all the stakeholders (people with and affected by MS, health care providers, and policy makers). To meet this objective, the study will use focus groups and individual interviews. In that perspective, MUSICALISE has defined 2 specific objectives that involve patients: * Define the appropriate care pathway based upon the perceptions and experiences of people with MS and that of health care providers involved in MS management. Due to heterogeneity of the disease, it is envisaged to define a "matrix"/journey with the different potential health events (specific to MS or linked to comorbidities) and the appropriate care to provide with the relevant health care providers. This 360° view (events \* level of expertise \* relevant actors) over time will include the identification of complex situations where patients have a high need of expert care, and it will also highlight periods when the risk of coordination issues is increased. * Compare care pathways depending on their referral to MSCU or not (before/after or here/elsewhere), with different kinds of outcomes (care trajectories, clinical parameters including therapies and MRI, as well as patient reported outcomes and experiences). Using indicators related to both objective and subjective health, MUSICALISE will help to understand the expected outcomes from MSCU, and how these structures contribute to improved experiences for people with MS and improved quality of care. Our research question is "Under what conditions and how can the implementation of MSCU lead to better care integration and improved outcomes for people with MS and professionals according to their needs ?". This overarching question is declined into several sub-questions. What is the "ideal" care pathway according to people affected by MS and health care providers ? The hypothesis is that unmet needs regarding the appropriate care pathway and expectations regarding coordination may be different between patients and healthcare professionals, based on their respective experiences. In addition, it's expected that the level of expertise available in MSCU may not be necessary at every step throughout the disease course (phases of stable disease, good therapy responders, no specific health events...) nor feasible (time and costs constraints, human resources shortage). This would call for a model based upon "gradation of care" according to the needs of people with MS that optimizes referral to MSCU. The aim will be to identify, with the patients, the coordination activities that punctuate patients' experience : * Assessing all the needs and objectives of the patient and the professionals at the MSCU, including the patient's or carer's share of coordination ; * Examine the development of the care plan and how it is personalised to the patient's unique circumstances and the role played by all the health and social care professionals involved ; * Examine how the care plan is reviewed and updated as necessary ; * Studying how care, medical and other appointments are planned ; * Studying how care is provided directly to the patient ; * Studying how the patient's state of health and needs are monitored and followed up (by the Expert Centre and locally) ; * Studying how information is transferred between professionals and patients ; * Studying how the patient is involved in the care pathway (involvement in decisions, collaboration with care providers) ; * Studying the support methods used: therapeutic education, support for adherence to treatment, emotional support, technical support for monitoring biological parameters or carrying out administrative tasks, support from community resources, associations, etc.) ; * Finally, studying how relational continuity is established by building a permanent, personal and meaningful relationship of mutual trust over time.