Search

Background Patient engagement is vital in multiple sclerosis (MS) in order to optimise outcomes for patients, society and healthcare systems. It is essential to involve all stakeholders in potential solutions, working in a multidisciplinary way to ensure that people with MS (PwMS) are included in shared decision-making and disease management. To start this process, a collaborative, open environment between PwMS and healthcare professionals (HCPs) is required so that similarities and disparities in the perception of key areas in patient care and unmet needs can be identified. With this patient-centred approach in mind, in 2016 the MS in the 21st Century Steering Group formed a unique collaboration to include PwMS in the Steering Group to provide a platform for the patient voice. Methods The MS in the 21st Century initiative set out to foster engagement through a series of open-forum joint workshops. The aims of these workshops were: to identify similarities and disparities in the perception and prioritisation in three key areas (unmet needs, the treatment burden in MS, and factors that impact patient engagement), and to provide practical advice on how the gaps in perception and understanding in these key areas could be bridged. Results Combined practical advice and direction are provided here as eight actions: 1. Improve communication to raise the quality of HCP–patient interaction and optimise the limited time available for consultations. 2. Heighten the awareness of ‘hidden' disease symptoms and how these can be managed. 3. Improve the dialogue surrounding the benefit versus risk issues of therapies to help patients become fully informed and active participants in their healthcare decisions. 4. Provide accurate, lucid information in an easily accessible format from reliable sources. 5. Encourage HCPs and multidisciplinary teams to acquire and share new knowledge and information among their teams and with PwMS. 6. Foster greater understanding and awareness of challenges faced by PwMS and HCPs in treating MS. 7. Collaborate to develop local education, communication and patient-engagement initiatives. 8. Motivate PwMS to become advocates for self-management in MS care. Conclusion Our study of PwMS and HCPs in the MS in the 21st Century initiative has highlighted eight practical actions. These actions identify how differences and gaps in unmet needs, treatment burden, and patient engagement between PwMS and HCPs can be bridged to improve MS disease management. Of particular interest now are patient-centred educational resources that can be used during time-limited consultations to enhance understanding of disease and improve communication. Actively bridging these gaps in a joint approach enables PwMS to take part in shared decision-making; with improved communication and reliable information, patients can make informed decisions with their HCPs, as part of their own personalised disease management.

Trials of anti-inflammatory therapies in non-relapsing progressive multiple sclerosis (MS) have been stubbornly negative except recently for an anti-CD20 therapy in primary progressive MS and a S1P modulator siponimod in secondary progressive MS. We argue that this might be because trials have been too short and have focused on assessing neuronal pathways, with insufficient reserve capacity, as the core component of the primary outcome. Delayed neuroaxonal degeneration primed by prior inflammation is not expected to respond to disease-modifying therapies targeting MS-specific mechanisms. However, anti-inflammatory therapies may modify these damaged pathways, but with a therapeutic lag that may take years to manifest. Based on these observations we propose that clinically apparent neurodegenerative components of progressive MS may occur in a length-dependent manner and asynchronously. If this hypothesis is confirmed it may have major implications for the future design of progressive MS trials.

The efficacy of interferon beta (IFN b) in the treatment of relapsing /remitting multiple sclerosis (RRMS) is now well established. This agent has been shown to reduce the frequency and severity of relapses and to slow progression of neurological disability [1 /5]. In addition, magnetic resonance imaging (MRI) studies have demonstrated that IFN b reduces the number of active lesions and the accumulation of total MRI lesion load over time [6 /8]. Three IFN b products are currently available and licensed for use in MS, but at different doses and with different dosing frequencies and routes of administration. For many clinicians this raises questions about whether the products differ in their efficacy, which dose is optimal, and whether the route of administration is important. In addition, they may be unsure of when during the disease course they should initiate therapy with this agent. Evidence has accumulated during the last several years indicating that, in order to achieve maximum benefit, therapy with IFN b should be with as high a dose as possible and begin early after diagnosis of the disease. The aim of the present paper is to show why early treatment of RRMS with IFN b is likely to be beneficial and to provide evidence for a dose-response. It also describes recently published results with IFN b1a, which confirm the long-term benefits of early and high-dose treatment. 2. Why IFN b therapy should start early