Журнал клинической неврологии и нейрохирургии

Rethinking MS in Europe Prioritising Timely Integrated Services for People with Multiple Sclerosis

Abstract

Monica Di Luca , Claudio Bassetti, Joke Jaarsma, Per Soelberg Sorensen, Maura Pugliatti, Mario Alberto Battaglia, Cristina Tiu, Ludwig Kappos, Massimo Filippi , Hans-Peter Hartung, Giancarlo Comi, Jenny Freeman, Kerstin Hellwig, Elisabeth Kasilingam, Pedro Carrascal and Vinciane Quoidbach*

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 people living with MS.

Results: Highlight three main gaps in the management of MS across Europe. Firstly, providing multidisciplinary care is organisationally challenging. Secondly, access to specialist MS roles and programmes is limited. Thirdly, there is a lack of suitable information for people with MS. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units where there is an adequate infrastructure to provide proper monitoring of patients, comprehensive assessment, and detection of side effects and ability to promptly address them. A multidisciplinary MS Care Unit approach can be defined as the presence of a group of different specialists, who work together and with the MS neurologists and nurses with a formalized diagnostic workup procedure, protocols for initiation and follow-up of DMTs and management of complications.

Conclusion: Rethinking on how MS is managed in order to adequately provide care and support for all people with MS is needed. The RETHINKING MS in Europe report highlights that European and national policymakers should focus their efforts around these priorities and take specific actions. Similarly, the COVID-19 pandemic brings opportunities to re-think integrated care models across Europe.