Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

Elisabeth G Celius,1 Heidi Thompson,2 Maija Pontaga,3 Dawn Langdon,4 Alice Laroni,5 Stanca Potra,6 Trishna Bharadia,7 David Yeandle,8 Jane Shanahan,9 Pieter van Galen,10 Nektaria Alexandri,11 Jürg Kesselring12 1Deparment of Neurology, Oslo University Hospital and University of Oslo, Oslo, Norway; 2The Neurology Centre, Craigavon Area Hospital, Portadown, UK; 3MS in the 21st Century Steering Group, Riga, Latvia; 4Department of Psychology, Royal Holloway, University of London, London, UK; 5Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Italy and IRCCS Ospedale Policlinico San Martino, Genoa, Italy; 6Patient Member of the MS in the 21st Century Steering Group, Bucharest, Romania; 7Patient Member of the MS in the 21st Century Steering Group, Buckinghamshire, UK; 8Patient Member of the MS in the 21st Century Steering Group, Southampton, UK; 9Patient Member of the MS in the 21st Century Steering Group, Ascot, UK; 10Patient Member of the MS in the 21st Century Steering Group, Overijse, Belgium; 11Global Medical Affairs, Neurology and Immunology, Merck KGaA, Darmstadt, Germany; 12Department of Neurology & Neurorehabilitation, Kliniken Valens, Valens, SwitzerlandCorrespondence: Elisabeth G CeliusDepartment of Neurology, Oslo University Hospital, Rikshospitalet, Postboks 4950 Nydalen, Oslo 0424, NorwayTel +47 91 50 27 70Email uxelgu@ous-hf.noPurpose: Multiple sclerosis (MS) prognosis is often uncertain. This literature review considers patients’ understanding of, and perspectives on, MS progression to better comprehend the unmet needs of people with MS (PwMS), in order to improve treatment adherence and quality of life (QoL).Methods: Literature searches for peer-reviewed papers concerning patient perspectives on the progression of MS and comparable conditions, published between January 2000 and January 2020, were conducted.Results: Little qualitative evidence exists that examines PwMS’ perspectives on MS progression. The understanding and meaning ascribed to terms such as “disease progression” vary. Some PwMS find disease labels stigmatizing, confusing, and disconnected from reality. The lack of a clear definition of progression and discrepancies between PwMS and healthcare professional (HCP) perspectives may contribute to misunderstanding and poor communication. Patient descriptions of progression and relapses include symptoms in addition to those evaluated by standard severity and disability measures. Compared with HCPs, PwMS are still focused on relapse prevention but place higher priority on QoL and ascribe different relative importance to the causes of poor adherence to treatment plans. PwMS want to discuss progression and likely prognosis. Such communication needs to be personalized and delivered with sensitivity, at an appropriate time. Poor treatment adherence may arise from a lack of understanding and poor communication, particularly around treatment goals. The few studies that directly considered patient perspectives on the progression of comparable conditions supported and extended the perspectives of PwMS. Lack of adequate communication by HCPs was the most common theme.Conclusion: Patient perspectives on disease progression in MS and other chronic progressive conditions are under-investigated and under-reported. The limited evidence available highlights the importance of providing adequate information and effective HCP communication. While further studies are needed, the current evidence base offers information and insights that may help HCPs to enhance patient care, well-being, and treatment adherence.Keywords: multiple sclerosis, disease progression, patient engagement, shared decision-making, communication