Dr. Alice Schabas
Neurologist, UBC Hospital
Managing multiple sclerosis is a large undertaking with many moving parts. During the global pandemic, patients and doctors alike have had to learn new tricks to ensure continuity of care.
Multiple sclerosis (MS) is a complex disease. It’s serious, it can cause progressive disability, it’s incurable, and it presents differently in each patient. The lifelong task of managing the disease requires vigilance and diligence, as well as an individualized plan that considers patient-disease, and treatment-related factors. Thankfully, research into new innovations in MS is ongoing and advances in disease-modifying therapies continue, but keeping the disease well-managed is an art as much as a science, and success depends on a broad and holistic approach that doesn’t simply begin and end with selecting the right treatment.
I really think that managing my MS through this has helped me improve the way I live. […] What I’m most looking forward to after the pandemic is reconnecting with others.
“While treatment is an important part of managing MS, it’s one piece,” says Dr. Alice Schabas, neurologist at the UBC Hospital MS Clinic. “Living with MS means patients are dealing with so much more than flares and relapses. Fatigue, cognitive concerns, and mental health issues are all common aspects of living with the disease.”
An empowered patient is a healthy patient
It’s a challenging time to be managing a condition like MS, but one positive outcome of the COVID-19 pandemic may be the rise of an even more educated and empowered MS patient population.
Elisabeth Léger, who was diagnosed with MS in 2017, was fairly new to managing MS in any context when the pandemic arrived and changed everything. As a new mother, Léger found integrating technology into her care an essential tool for maintaining a sense of normalcy and control. “I’m using the Aby app,” she says. “I use it pretty much every day like a personal journal to log my routine and also to reach out to a nurse when I have questions. What I like about it is that I can send a report directly to my neurologist so he can see what I log in.”
More than ever, remote technologies like videoconferencing are essential to continuity of care. “During COVID we’ve been, if anything, more available to patients,” says Dr. Schabas. “The difference is that those interactions are now taking place on the telephone or via telehealth. This has been good, but there are drawbacks that will only become obvious as time goes on. Without a physical examination at least once a year, how are we going to identify subtle changes that could indicate a patient going from relapsing MS to secondary progressive MS? I think we’ll see a hybrid model moving forward, and it’s not a bad thing.”
The advantage of a hybrid model with more room for technology is also apparent on the professional side, with new tools and ways of interacting proving instrumental in ensuring that research and professional development continue uninterrupted. “I think that one thing that’s been quite positive about the COVID-19 pandemic, is that there have been a lot more online educational opportunities for clinicians,” says Dr. Schabas. “With so many new issues popping up during the pandemic, it’s been offering us a lot of opportunity for insight into some of the new data emerging.”
In times of uncertainty, continuity is everything
The global pandemic has reshaped considerations in managing MS, including the continuity and effectiveness of treatment, immunologic effects, and services and technology all aimed at helping manage patients holistically for the long term.
There are so many unknowns with MS, even before you add a global pandemic into the mix. Dr. Schabas emphasizes that doctors still don’t have all the answers to the questions that patients may want to ask, but they’re working on them, and they have a solid grounding for offering advice. Looking back at this past year, the one thing that stands out is the incredible success in making the hard overnight transition to a new model and maintaining that critical continuity of care for patients like Léger throughout.
“I really think that managing my MS through this has helped me improve the way I live,” says Léger. “I now have a totally different way of eating and managing my stress. I’m meditating and doing all these things I didn’t do before. I feel like I can do a lot now to help control my disease. What I do miss is being with the MS community in person. Like everyone else, what I’m most looking forward to after the pandemic is reconnecting with others.”
This article was made possible with support from Biogen Canada.