Two Sides to Every Story: Perspectives from Four Patients and a Healthcare Professional on Multiple Sclerosis Disease Progression

ABSTRACT: Multiple sclerosis (MS) is a chronic progressive disease and many patients transition from an initial relapsing–remitting course to a secondary progressive pattern. Accurate classification of disease status is critical to ensure that patients are treated appropriately and kept informed of their prognosis. Consensus terms defining the different forms of MS are available but were developed primarily for healthcare professionals (HCPs) and may be of limited value to patients. This article provides direct insights from four patients with MS, at different points in their disease trajectory, regarding their understanding of, and attitudes toward, MS progression. We also examine the utility of the current classification systems from the perspectives of patients and HCPs. Responses collected during in-depth, structured interviews and questionnaires portrayed the difficulties patients face accepting their MS diagnosis and treatment, revealed how understanding of the term “disease progression” varies considerably, and highlighted the challenges surrounding the period of transition to secondary progressive MS (SPMS). The terms describing different MS types were considered confusing and can make patients feel “compartmentalized” or “labeled”. Patients also struggled to relate these terms to their reality of living with MS, were reluctant to discuss progression with their HCPs, and feared being diagnosed with SPMS owing to concerns about treatment access. These insights highlight the need to develop patient-friendly language to describe MS progression; it may also be preferable for HCPs to describe MS as a disease spectrum in discussions with their patients. FUNDING: Novartis Pharmaceuticals Corporation. PLAIN LANGUAGE SUMMARY: Plain language summary available for this article.