Development of an international, multidisciplinary, patient-centered Standard Outcome Set for Multiple Sclerosis: The...

Area of Science:

• Neurology
• Patient-Reported Outcomes
• Healthcare Management

Background:

• Current Multiple Sclerosis (MS) outcome measurement lacks standardization, hindering value-based care.
• Identifying patient-prioritized outcomes is crucial for effective MS management.

Approach:

• A mixed-method approach involved systematic literature review, patient focus groups (n=30), and a multinational expert Delphi process (n=17).
• International collaboration included experts from diverse disciplines and seven countries.

Key Points:

• Developed a Standard Outcome Set for MS (S.O.S.MS) with 14 outcomes in four domains: disease activity, symptoms, functional status, and quality of life.
• Selected specific outcome measures and defined measurement protocols for each outcome.
• Identified seven essential case-mix variables for comprehensive data collection.

Conclusions:

• The S.O.S.MS provides a standardized guideline for measuring MS outcomes in clinical practice and research.
• This set facilitates national and international benchmarking of real-world MS outcomes.
• Implementation of the S.O.S.MS supports improved patient value and the transition to value-based MS care.