Guiding Multiple Sclerosis Care: An Update to the 2013 Consensus Statement from the MS in the 21st Century Steering Group

Abstract

Introduction: In 2013, the “MS in the 21st Century” (MS21) initiative established a consensus statement for multiple sclerosis (MS) standards of care, with an overall vision including “Full access to personalised treatment, with reimbursement, to achieve freedom from disease.” This update considers progress made since 2013 and priority areas for further improvement. Methods: A Delphi process with two rounds of anonymised voting was used to develop updated consensus statements based on three key themes: (1) optimising current MS care provision; (2) facilitating shared decision-making and patient education; and (3) continuing MS research and development. Voting panels (n = 30), including people living with MS (PwMS), MS patient advocacy group (PAG) representatives and healthcare professionals (HCPs) indicated agreement using a sliding scale [1 (strongly disagree) to 5 (strongly agree)] and free-text feedback. Statements were revised after each voting round, with the consensus threshold set a priori as ≥ 75% agreement. There was a 70% response rate at each round of voting, with respondents representing 13 countries. Results: Seven original principles were expanded to 14, with emerging themes including unmet care needs in ageing PwMS, MS prevention, and treatments for progressive MS and remyelination. The top priority for both HCPs and PwMS/PAG representatives was “access to quick and decisive treatment after diagnosis.” Conclusion: For PwMS to be unburdened by symptoms, professionals and stakeholders within the MS community should work together to meet the updated MS21 vision, including access to appropriate care, greater PwMS involvement in decisions, and further research and development to address unmet needs in MS.