Future MS care: a consensus statement of the MS in the 21st Century Steering Group

Abstract

The “MS in the 21st Century” initiative was established with the purpose of (1) defining how multiple sclerosis (MS) treatment and standards of care should look in the 21st century; (2) developing a minimum standard of care across the world; and (3) motivating the broad MS community to align standards of care and challenge the current treatment paradigm. The aim was to develop a consensus statement to reach and influence the broader MS community. An expert steering group from Europe and Canada—consisting of neurologists, patient advocates, a pharmacoepidemiologist/pharmacoeconomist, and representatives from national MS centers—participated in a series of workshop-driven meetings between February 2011 and 2012. After three phases of discussions, the steering group identified that the overall vision for future care of MS should be full access to personalized treatment, with reimbursement, to achieve freedom from disease. They constructed seven overall principles that support this vision: personalized care, patient engagement, commitment to research, regulatory body education and reimbursement issues, new endpoints in clinical trials, more therapy options, and MS centers of excellence. This consensus statement outlines the key aspects of the seven principles that need to be addressed. The “MS in the 21st Century Steering Group” hopes that this consensus statement acts as a call to action for healthcare providers and decision-makers to address simultaneously the overarching principles that will guide patient management in order to improve outcomes for people with MS.

Remotely engaged: Lessons from remote monitoring in multiple sclerosis

“…When care providers use a patient-centered approach, patients utilize health care services less often[3] with reduced associated cost[4,5]. For these reasons, both elements are part of a consensus vision for the future of MS care[6]. Internet and mobile health technologies (mHealth) can facilitate symptom reporting and patient-centered care by regularly gathering health-related information at low cost, changing the patient role through unprecedented data access and control.…”

Clinical decision-making in multiple sclerosis: Challenges reported internationally with emerging treatment complexity

“…However, it is especially crucial in MS as both disease course and response to treatments are heterogeneous (Derfuss, 2012). The MS in the 21 st Century Steering Group, developed a consensus statement of their vision for the future of MS care, including the principles of personalized care and patient engagement (Rieckmann et al, 2013). However, in order to provide personalized care to each patient, healthcare providers must be knowledgeable of available treatment options, the patient profiles for which they are appropriate, and able to inform and address patient concerns regarding the risks and benefits of each option (Giovannoni and Rhoades, 2012).…”

Managing psychological stress in the multiple sclerosis medical visit: Patient perspectives and unmet needs

“…In a consensus statement intended to guide patient management, the MS in the 21st Century Steering Group states that “.…affording patients psychological and social support as part of their treatment package is likely to ensure the greatest possible mitigation of the potential financial, social, and psychosocial burdens associated with MS.” (Rieckmann et al, 2012, p. 464). Our preliminary findings suggest that many MS patients and physicians are not communicating about stress, casting doubt as to whether patients are receiving adequate care in this arena.…”