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

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.

In multiple sclerosis (MS), there are different cells in the immune system that contribute to the disease. The main cells in the immune system are T and B cells. People with MS (PwMS) might not be familiar with details about the immune system, and healthcare professionals might not always communicate details about how treatments work clearly to PwMS when choosing treatments with them. It is important for PwMS to have all the information they need to help make decisions about treatments. This information needs to be given in a way they can understand. This is especially important during the coronavirus disease 2019 (COVID-19) pandemic. In this paper, we first looked at what research has already been published about what is most important to PwMS when making treatment decisions. The existing research says that safety and effectiveness are the most important things and that PwMS prefer treatments that they can take themselves. PwMS also need better communication and information from doctors to make decisions and to help explain how MS treatments work in the body. Next, we gave a survey to the patients who are authors of this paper to ask about what is important to them when making treatment decisions. Their answers were very similar to the existing research. Overall, PwMS need better communication from healthcare professionals about the immune system. This paper also includes plain language descriptions and figures to help healthcare professionals explain and discuss the importance of the immune system in MS with PwMS.

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

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 available for this article.

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine.

When faced with a diagnosis of multiple sclerosis (MS), patients often turn to the Internet and social media to find support groups, read about the experiences of other people affected by MS and seek their advice, and research their condition and treatment options to discuss with their healthcare professionals (HCPs). Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient empowerment and patient participation in treatment decision-making and MS research. These themes are exemplified with first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients from the perspective of HCPs, including new opportunities for HCPs to engage in participatory medicine and to improve communication with and among patients. We consider both the benefits afforded to and the potential pitfalls faced by HCPs when interacting with their patients via these routes, and discuss potential concerns around privacy and confidentiality in the use of the Internet and social media in the clinical context. Communication online is driving the evolution of the patient-HCP relationship, and is empowering patients to participate more actively in the decision-making process relating to the provision of their health care. Funding Novartis Pharmaceuticals Corporation.

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education.

A diagnosis of multiple sclerosis (MS) is life-altering. Because the course of MS is heterogeneous, patients may face uncertainty in terms of long-term physical and cognitive challenges, potential loss of employment, and the risk of social isolation. Patients often turn to the Internet and social media for information about MS and its management, and to seek out fellow patients and support groups. Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient education. We consider the access that these conduits provide not only to other patients with MS but also to a wealth of disease-related information online. These themes are further illustrated with first-hand experiences of the patient author and her physician. We also explore the impact of the Internet and social media on the education and support of patients with MS from the healthcare professional's (HCP's) perspective, including opportunities for HCPs to promote disease education among their patients, and the advantages that arise from patients being better informed about their disease. The rise of the Internet and social media has changed the patient experience, helping patients to support each other, to educate themselves proactively about their condition, and to participate more actively in decisions relating to disease management than perhaps was the case historically. Funding Novartis Pharmaceuticals Corporation.