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

• Published in: Neurodegenerative disease management Vol. 11; no. 1; pp. 9 - 19
• Main Authors: Torkildsen, Øivind, Linker, Ralf A, Sesmero, Jose Mm, Fantaccini, Simone, Sanchez-de la Rosa, Rainel, Seze, Jerome de, Duddy, Martin, Chan, Andrew
• Format: Journal Article
• Language: English
• Published: England Future Medicine Ltd 01.02.2021
• Subjects: Biomarkers; diagnosis; disease management; disease-modifying therapy; Epidemiology; Medical diagnosis; Multiple sclerosis; neurologists; Nurses; Patients; Quality of life; secondary progressive multiple sclerosis; United Kingdom > UK; Europe; diagnosis; secondary progressive multiple sclerosis; nurses; neurologists; disease-modifying therapy; disease management
• ISSN: 1758-2024; 1758-2032
• DOI: 10.2217/nmt-2020-0054

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. This article summarizes the findings from an international expert group meeting conducted to understand the current and future patient journey of secondary progressive multiple sclerosis (SPMS), across seven European countries. Although there are a number of challenges in the diagnosis and treatment of patients with SPMS, it is evident that the collaborative efforts of associated stakeholders (neurologists, nurses, caregivers, payers, patients and the pharmaceutical industry), along with proper knowledge on diagnosis/treatment, and availability of real-world data in the future, will allow for optimal care that will improve the quality of life of people living with SPMS. Uncertainty in SPMS diagnosis and management emphasizes the need for robust assessment guidelines, enhanced awareness and collaborative efforts among stakeholders to allow optimal care of SPMS patients