At ECTRIMS 2024, the world’s leading event for multiple sclerosis (MS), the PROMS Initiative made a significant impact by presenting the first results from its global survey. ECTRIMS remains a pivotal platform where the latest advancements in MS research and clinical practice are discussed, and this year, the PROMS Initiative took center stage, highlighting the importance of Patient-Reported Outcomes (PROs) in the future of MS care.
The PROMS Initiative, which engages people living with MS (pwMS) globally, aims to elevate their voices through scientifically validated tools that track symptoms and quality of life over time. At this year’s ECTRIMS, PROMS showcased the preliminary results of its survey, conducted with 5,218 participants from 69 countries. The survey offered a deep dive into the most frequently reported symptoms—such as stress, pain, concentration problems, and memory issues—and examined how these symptoms impact different demographic groups, disease stages, and regions.
These findings underline the ongoing transformation toward personalized medicine for MS patients, confirming that disease management is not solely about progression, but also involves managing different symptom clusters across various stages of life and disease course.
The detailed ePoster from this survey is available for download here, allowing the broader community to access and explore the results presented at ECTRIMS 2024.
Patient-Reported Outcomes and Perspectives: A Key Focus at ECTRIMS 2024
The importance of Patient-Reported Outcomes (PROs) and their potential to revolutionize MS healthcare was emphasized during a highly attended session chaired by Paola Zaratin (co-chair of the SSC group) and Per Soelberg Sørensen. This session shed light on how PROs can drive patient-centered care and improve the quality of life for pwMS.
Scientific Session 14: Patient reported outcomes and perspectives
Thursday, 19 September 2024
Among the standout presentations, Vasilis-Spyridon Tseriotis introduced the first results of the PROMS Global Multi-Stakeholder eHealth Tools Landscaping exercise, a comprehensive review of existing digital health tools aimed at improving patient care through the use of both active and passive Patient-Reported Outcome Measures (PROMs) for the remote monitoring of changes over time, revealing the silent progression of the disease and enabling personalized management of multiple sclerosis (MS).
Vasilis highlighted 16 eHealth tools that were reviewed, focusing on key innovations such as real-time symptom tracking, promoting patient independence, and a focus on health domains like movement, cognition, and vision.
These tools, hosted in a living catalog by the MS Data Alliance, represent significant progress in the digital health landscape for MS care, enabling patients to monitor their condition outside of clinical settings and fostering a more dynamic interaction between patients and healthcare providers. The review also touched on the data privacy and cybersecurity measures in place, emphasizing the use of encryption and strict access controls to ensure the security of patient data.
Another key speaker, Evy Reinders from the CEMCAT (Centre d’Esclerosi Múltiple de Catalunya), presented promising results from ongoing research showing how PROMs can be integrated into the continuous monitoring of disease progression in MS. Her work aligns with the broader goals of the PROMS Initiative to harness eHealth tools in the daily lives of patients.
Key Takeaways:
• Patient-centered care is the future: The shift toward Patient-Reported Outcomes (PROs) and eHealth tools is reshaping how chronic diseases like MS are managed, emphasizing patient empowerment and involvement.
• Living catalog of eHealth tools: A dynamic, evolving catalog of 16 eHealth tools is now available to support the use of PROs in MS management, hosted by the MS Data Alliance. These tools cover various health domains crucial for MS patients.
• Data security as a priority: Ensuring patient privacy and data protection is fundamental, with tools that employ encryption and strict access controls.
This year’s session reinforced the critical need for continuous innovation, stakeholder collaboration, and the development of standardized tools to ensure that patients remain at the core of healthcare transformation.
Special thanks to all the speakers and participants for making this session a success. The PROMS Initiative will continue to work toward empowering MS patients and improving healthcare outcomes.
See you in Barcelona next year!
