Living with secondary progressive multiple sclerosis in Europe: perspectives of multiple stakeholders

Author:

Torkildsen Øivind1ORCID,Linker Ralf A2,Sesmero Jose MM3,Fantaccini Simone4,la Rosa Rainel Sanchez-de4ORCID,Seze Jerome de5,Duddy Martin6,Chan Andrew7

Affiliation:

1. Department of Neurology, Haukeland University Hospital, 5020, Bergen, Norway

2. Department of Neurology, University Hospital, 93053, Regensburg, Germany

3. Hospital Clínico San Carlos, 28040, Madrid, Spain

4. Medical Affairs, Novartis Pharma AG, CH-4056, Basel, Switzerland

5. University Hospital of Strasbourg, 67200, Strasbourg, France

6. Department of Neurology, The Newcastle upon Tyne Hospitals Trust, Newcastle upon Tyne, NE7 7DN, UK

7. Department of Neurology, Inselspital, Bern University Hospital, University of Bern, 3010, Bern, Switzerland

Abstract

The transition from relapsing-remitting multiple sclerosis to secondary progressive multiple sclerosis (SPMS) remains a clinical challenge owing to the heterogeneous course of the disease, indistinct disease progression and lack of availability of validated biomarkers and diagnostic tools. This article summarizes the outcomes from an international expert group meeting conducted to validate the preliminary research findings gathered through interviews with primary healthcare stakeholders and pharmaceutical representatives, and to understand the current and future patient journey of SPMS across seven European countries. We highlight the uncertainty in SPMS diagnosis and management and, consequently, the need for uniform assessment guidelines, enhanced awareness and a collaborative effort between the stakeholders associated with SPMS patient care and the pharmaceutical industry.

Funder

Novartis Pharma AG

Publisher

Future Medicine Ltd

Subject

Neurology (clinical)

Reference35 articles.

1. Multiple Sclerosis: Current Knowledge and Future Outlook

2. Global, regional, and national burden of multiple sclerosis 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

3. European Multiple Sclerosis Platform. MS Barometer 2015: raising the voice of people with MS (2015). http://www.emsp.org/wp-content/uploads/2017/02/BAROMETER-2015-28.02.2017.pdf

4. European Multiple Sclerosis Platform. Under pressure: living with MS in Europe. http://www.underpressureproject.eu/web/living-with-ms-in-europe

5. MS International Federation. Global MS employment report. https://www.msif.org/wp-content/uploads/2016/05/Global-MS-Employment-Report-2016.pdf

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