AAN 2025 | The need for more comprehensive tools to capture the whole patient journey in multiple sclerosis
Andreas Lysandropoulos, MD, PhD, Parexel, Durham, NC, comments on the need to develop tools that capture the whole patient journey for individuals living with multiple sclerosis. Dr Lysandropoulos highlights that patients experience a wide range of symptoms beyond those commonly discussed, and notes that current clinical assessment tools often fail to capture these aspects of the patient’s journey. He emphasizes the need for more comprehensive and validated tools to improve research and clinical practice. This interview took place at the 77th American Academy of Neurology (AAN) Annual Meeting in San Diego, CA.
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Transcript
We all know that multiple sclerosis is the disease of a thousand faces. That means that the patient journey is never the same. Each patient is different. Now for many years, I would say decades, people are focusing on some mainstream outcomes in multiple sclerosis that basically offer visibility on walking problems, on visual problems, on balance problems and problems...
We all know that multiple sclerosis is the disease of a thousand faces. That means that the patient journey is never the same. Each patient is different. Now for many years, I would say decades, people are focusing on some mainstream outcomes in multiple sclerosis that basically offer visibility on walking problems, on visual problems, on balance problems and problems. We know though that patients living with multiple sclerosis, they experience much more than that. They have extreme fatigue, they have then sexual problems, they have psychological problems and all these have an impact on their actual life. So they are not active members of the society anymore. Many of them, they cannot participate in family gatherings and experiences and they cannot enjoy life. So what we did in that abstract, first of all, we did a literature review to identify those problems that are not very much discussed by the community or when we see our neurologist as a patient living with multiple sclerosis and there are many of them so we categorize them and then we checked which are the actually used tools as clinical assessment tools that really try to understand these problems I mean are we measuring these problems and we present actually an overview of of the currently available tools and what is covered and not. The conclusion is that there is no tool that covers the whole patient journey, the 360 patient journey of people living with multiple sclerosis, which means that there is a challenge and a good opportunity in front of us to really fine-tune the existing, the currently available tools or maybe develop and validate new tools that can be useful for research when we try to develop new therapies, but especially in clinical practice.
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Disclosures
Employee at Parexel.
