For many of the worst symptoms that may be experienced by individuals living with progressive forms of multiple sclerosis, there are insufficient treatment approaches that can relieve them and improve quality of life. To jump start research to address these gaps, an expert panel of researchers, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to highlight and focus research priorities to address key symptoms: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
The expert panel has published a paper outlining their recommendations as a first step toward driving research to develop much-needed solutions for these symptoms.
- The authors found that minimal research funding is currently directed toward these symptoms, and call out the need for increased research investments to identify solutions.
- Key knowledge gaps and priority research questions were outlined for the four symptoms, including the need for better ways to measure symptom severity, how to best treat them, and how to sustain the benefits of treatments to provide relief and improve function for people living with progressive MS.
The paper was published in Multiple Sclerosis Journal on March 15, 2021 and is an outcome of a May 2018 Alliance Scientific Congress that focused on symptom management and rehabilitation in progressive MS, and included scientists, industry members, and people affected by MS.
The authors identified key knowledge gaps and research priorities in each symptom area.
- How do we objectively measure fatigue?
- Which interventions or combinations of approaches can significantly reduce fatigue in people with progressive MS?
- Are there ways to determine which interventions will work best in which individuals?
- Can rehabilitation interventions that address mobility protect the brain, or improve brain function?
- Can the benefits of mobility treatments be enhanced by altering the intensity, frequency, or duration of treatment?
- What are ways to motivate people to engage in, and adhere to, rehabilitation programs in the long term, so that benefits are sustained?
- How can we identify and understand specific types of pain experienced by people with progressive MS, and what biomarkers or psychosocial factors might predict people’s responses to treatment?
- Which combinations of pharmacologic and rehabilitation interventions are most effective in treating pain in people with progressive MS, and how can we make effective treatments a part of the routine case of people with progressive MS?
Cognitive dysfunction (Thinking and Memory)
- Do cognitive interventions that work for people with relapsing MS also work for people with progressive disease?
- Which interventions to improve cognition can have impact on daily life?
- Does early treatment of cognitive problems improve outcomes and help preserve cognitive function in people with more advanced progressive MS?
The authors point out that some progress is being made in awareness in the community of the importance of exercise and rehabilitation strategies, as well as the growing knowledge that successful treatment of symptoms can in some cases produce beneficial changes to the brain and to the underlying biology of MS. Investments in high-quality research to answer the identified research questions and gaps is crucial to finding ways to reverse symptoms and restore function in people with progressive MS.