A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies

Abstract

Introduction The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era. Methods In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS. Results Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools. Conclusions This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS. Supplementary Information The online version contains supplementary material available at 10.1007/s40120-022-00349-5.

Examining the Type, Quality, and Content of Web-Based Information for People With Chronic Pain Interested in Spinal Cord Stimulation: Social Listening Study

“…Through this approach, patients are supported to make informed and active choices concerning their health, compared with fulfilling the role of a passive recipient of care [ 34 ]. Empowered decision-making in treatment selection is inevitably related to appropriate communication and information tools and greater patient involvement in the decision-making process [ 35 ]. Therefore, this study evaluated the availability and content of information on the internet regarding SCS, which is a crucial prerequisite to enhance empowered decision-making in the field of neuromodulation.…”

De-escalation of Disease-Modifying Therapy for People with Multiple Sclerosis Due to Safety Considerations: Characterizing 1-Year Outcomes in 25 People Who Switched from Ocrelizumab to Diroximel Fumarate

“…There are currently over 20 disease-modifying therapies (DMTs) available for the treatment of relapsing-remitting multiple sclerosis (RRMS) including oral, injectable, and infused medications [1]. The choice of DMT in people with multiple sclerosis (MS) is typically considered on the basis of efficacy and safety, as well as frequency of treatment and route of administration [2]. Escalation, de-escalation, or switching of DMT may be considered if a DMT is no longer optimal for a person with MS [3,4], and understanding when to make such treatment decisions is of key importance to optimizing the balance of risks and benefits [5].…”