https://orcid.org/0000-0002-9127-6488
Abstract
Purpose
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.
Data Sharing Statement
The database query/search strings and analyzed datasets from this study are available from the corresponding author on reasonable request.
Ethics Approval and Informed Consent
This study did not involve human subjects and/or animals or the use of identifiable patient data; therefore, ethical approval and informed consent were not required.
Acknowledgment
The MS in the 21st Century initiative is financially supported by Merck KGaA, Darmstadt, Germany. Secretariat support and editorial input were provided by Cello Health Communications. Search result sorting and medical writing assistance was provided by Owen Webb, Cello Health Communications. Secretariat support, editorial input and medical writing assistance were funded by Merck KGaA, Darmstadt, Germany.
Author Contributions
All named authors had full access to all of the content within this manuscript and take complete responsibility for the integrity and accuracy of the content. All named authors take responsibility for the integrity of the work as a whole and have given their approval for this version to be published.
Disclosure
Elisabeth G Celius has received honoraria for advisory boards and/or speaker honoraria from Almirall, Biogen, Merck KGaA, Roche, Novartis, Genzyme and Teva, and unrestricted research grants from Novartis and Genzyme, and reports personal fees from Biogen, Sanofi, and Novartis, and personal fees from Roche and Merck KGaA, outside the submitted work. Heidi Thompson has received honoraria for advisory board participation and travel grants from Merck KGaA and Biogen. Dawn Langdon has received research grants from Bayer, Merck KGaA, Novartis, and Biogen, all paid to her institution and has participated in speakers’ bureaus for Bayer, Merck KGaA, Almirall, Excemed, Teva, Roche, Novartis, Biogen, and Sanofi, has received consultancy honoraria from Novartis, Bayer, Merck KGaA, Biogen, Teva, and Sanofi, and reports grants and personal fees from Merck KGaA and Novartis, and personal fees from TEVA, Bayer, and Biogen, outside the submitted work. Alice Laroni has received personal compensation from Novartis, Sanofi Genzyme, Biogen, Merck KGaA, Roche and Teva for public speaking and advisory boards and has received research grants from the Italian Ministry of Health, the Italian Ministry of University, and The Italian MS Foundation, and reports personal fees from Biogen, Merck KGaA and Novartis, non-financial support from Roche, grants from Fondazione Italiana sclerosi multiplaoutside the submitted work. Trishna Bharadia reports personal fees from Merck KGaA, Actelion, Roche, Sanofi-Genzyme, Envision Pharma, Teva, Biogen, Novartis, Blue Latitude Health, and talkHealth, outside the submitted work, and is Ambassador for MS Society UK (voluntary position), Patron for Chilterns MS Centre (voluntary position), and Patron for Cambs Therapy Centre (voluntary position). Maija Pontaga, Stanca Potra, David Yeandle, Jane Shanahan, and Jürg Kesselring have received honoraria from Merck KGaA for MS in the 21st Century activities. Pieter van Galen has received honoraria from Merck KGaA for MS in the 21st Century activities and has received consulting and speaking fees from Novartis, Merck KGaA, Celgene R&D Sarl, F. Hoffman-La Roche, NV Roche SA, Mylan GMBH and Excemed. Nektaria Alexandri is an employee of Merck KGaA. The authors report no other potential conflicts of interest for this work.