Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research at the National MS Society discussed her team’s call to action for research.
Kathy Zackowski, PhD, OTR
A recent publication by the International Progressive MS Alliance, consisting of multiple sclerosis (MS) agencies across the world, has called for action in the field of progressive MS. The alliance has called on the research community expand on progressive MS research as well as organizations to devote more funding to its care.
The National MS Society is one such member organization of the alliance, and first author Kathy Zackowski, PhD, OTR, senior director, patient management, care and rehabilitation research, and colleagues outlined current issues with progressive MS research in the paper, published in the Multiple Sclerosis Journal. The authors of the paper isolated 4 symptoms that they believe need to be targeted in progressive MS research: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. They stressed the increased burden of these symptoms on people with progressive MS compared to those with relapsing MS.
NeurologyLive spoke with Zackowski to learn more about the need for progressive MS research and the current dearth of inquiry in this area. She discussed the lack of studies including progressive MS and the imbalance of treatments between relapsing-remitting MS and progressive MS.
Kathy Zackowski, PhD, OTR: Over 2.5 million people worldwide are affected by MS and 15% of these people are diagnosed with primary progressive MS. Eighty percent of people with relapsing-remitting MS will transition to secondary progressive MS. Treating MS has grown substantially. There's a growing number of disease-modifying therapies (DMTs), which is kind of the primary medical therapy that people with MS get. And these DMTs primarily treat relapsing remitting and secondary progressive MS, there's really only 1 approved for primary progressive MS. People with progressive MS have very few treatment options.
The clinical consequences of having progressive MS are really varied and cumulative. They range from kind of mild sensory or visual changes to more profound cognitive and motor impairments. We know that in addition to the individual effects from the progression of the disease, there are also broad far-reaching results. MS can impact a person's job, stress to their family, add to financial strain associated with medical care. Yet, the weight of evidence is focused on symptom management that comes overwhelmingly from studies that are predominantly or even solely involving people with relapsing-remitting MS.
This paper evolved because we understood that there's a lack of studies among people with progressive MS. And that creates a big challenge for clinicians and researchers in the field to evaluate symptomatic treatment in progressive MS. Back in 2018, the Progressive Alliance convened a scientific congress in Toronto, Canada, that focused on symptom management and rehabilitation in progressive MS. This was attended by scientists, industry members, and people affected by MS. It was meant to provide an avenue to share evidence supporting interventions specific to progressive MS. What we found is that the existing evidence was broad. So, there are some studies, but they were small and didn't really have sufficient depth and quality to meet the needs of people with progressive MS. We addressed cognitive rehab, the importance of exercise, motor learning, brain stimulation, fatigue interventions. But how do you tailor this to progressive MS? That was completely unanswered.
It became clear that we need faster and more efficient progress in the field. So, a big challenge for rehabilitation versus taking a medication or getting a shot is that it's complicated. It requires an expert to provide the intervention and then it requires a lot of effort from the person receiving it, and it's usually on a continuous basis—a few times a week, or even once a day. All these factors make it much more complicated to study as well as to provide. So, the call to action was really to target research efforts aimed at optimizing rehabilitation with the goal of improving quality of life for people with progressive MS, given that there isn't sufficient research being done. This affects how clinicians can even provide treatment to people with progressive MS. Ultimately, things need to move faster, and hopefully this paper is the start to that.
Transcript edited for clarity.