Brain Health: Time Matters in Multiple Sclerosis – Developmental Process and Objectives of International Consensus Policy Recommendations

Background: Disease understanding, diagnostic criteria, treatment options and monitoring procedures in multiple sclerosis (MS) are rapidly evolving. Major policy changes are needed, however, in order to translate these advances into improved outcomes.

Objectives: We describe the developmental process and objectives of an international consensus report and policy recommendations on diagnosis, therapeutic strategies and improving access to treatment in MS.

Methods: A literature survey guided by the lead author and undertaken by Oxford Health Policy Forum examined the personal and economic impact of MS, current practice in diagnosis, treatment and management, definitions of disease activity and barriers to accessing disease-modifying therapies. Two international writing groups of clinicians, researchers, specialist nurses, health economists and patient group representatives were assembled. From January to September 2015 the core author group of 10 people wrote an outline, reviewed 5 drafts and participated in structured consensus conferences on March 2 and May 22. A working group of 14 people participated in the second conference and reviewed 3 drafts. The report and its recommendations were published on October 6 2015.

Results: The report recommends a clear treatment goal: to preserve central nervous system tissue and maximize lifelong brain health (neurological reserve) by reducing disease activity.  This should be achieved by a therapeutic strategy based on proactive monitoring and shared decision-making. Early diagnosis, improved treatment access and generating real-world evidence are also key components.

The report makes 18 policy recommendations that aim to facilitate this therapeutic strategy. Each is directed towards at least one of: clinicians, specialist nurses and their professional bodies; patient groups; healthcare providers; health technology assessors; reimbursement agencies; regulatory authorities; pharmaceutical companies and curators of registries and databases. The findings and recommendations have been endorsed by 23 professional and patient organizations, including ACTRIMS, CMSC, IOMSN, MSIF and the National MS Society.

Conclusions: Enabling and promoting widespread adoption of the recommended therapeutic strategy has the potential to minimize disease activity, maximize lifelong brain health and improve outcomes for people with MS. Recommendations to facilitate this are directed towards all stakeholders who influence care quality.