Are Apps the Answer? Access in Multiple Sclerosis Care
A feature on NeurologyLive®, IJMSC Insights offers a closer look at the latest research and the people behind it from the community of the International Journal of Multiple Sclerosis Care (IJMSC) and the Consortium of Multiple Sclerosis Centers (CMSC).
With technology advances and their continued integration into everyday life still on the rise, it might seem that integrating apps into routine multiple sclerosis (MS) clinical care and monitoring might be the answer to current and future problems in the field. But what issues are there and how might apps effectively address them? Although the gaps in care differ in scope and type, many of these problems can be summed up in 1 word: access.
Access to Neurologists
According to a 2021 Neurology article, “In nearly every US state, a large mismatch exists between the need for neurologists and neurologic services and the availability of neurologists to provide these services….The current neurology mismatch reduces access to care, worsens patient outcomes, and erodes career satisfaction and quality of life for neurologists as they face increasingly insurmountable demands.”1 This problem persists into all of medicine, but appears to hit neurology particularly hard—an often cited figure from 2013 is that, by 2025, the United States will face a 19% shortage of neurologists.2
And it is not just an issue in the United States. In 2023 at the XXVI World Congress of Neurology, the shortfall in Africa was noted, including that 5 countries had no neurologists at all with an average of 0.12 neurologists for every 100,000 people for all countries on the continent combined.3 According to the World Health Organization, this puts Africa on par with Southeast Asia followed by the Eastern Mediterranean at 1.1 neurologists per 100,000; the Americas at 3; Europe at 6.6; and, leading, the Western Pacific at 12.9.4 Although these figures vary greatly at the more specific country and local levels, they do provide a clear picture of the need for specialized care.
Access to Monitoring
Earlier this year, a report on Floodlight Open, a study of smartphone sensor-based tests to assess MS state, was published. Oh et al express the problem of continuous access to disease state information quite clearly: “Conventional clinical assessment of MS relies on periodic in-clinic visits, typically every 6–12 months, or at the time of a relapse. Such infrequent observations can fail to comprehensively capture relapses or insidious deterioration that occur in between visits. In-clinic evaluations are further limited as they rely on patients’ recall of events and are not conducted in their natural environment.”5
It has also become clear that even individuals not in active relapse may still experience disease progression. A 2020 study found that “[m]ost disability accumulation in [relapsing MS] is not associated with overt relapses.”6 The study authors, Kappos et al, defined disability accumulation as “an increase in 1 or more of 3 measures (Expanded Disability Status Scale, timed 25-ft walk, or 9-hole peg test), confirmed after 3 or 6 months, and classified per temporal association with confirmed clinical relapses.”6 Outside of enrollment in a trial, how often do individuals with MS have access to such consistent monitoring?
Access to Information
Although not offered universally, if you spend any time at all in the MS patient space on social media you’ll notice the MRI scan posts, usually something along the lines of “Headed for my annual MRI. Fingers crossed!” Some are annual, some semiannual, some only if there are reasons to suspect relapse, some with contrast, some brain, some spine: The details vary, but the nerves seem to be the same. Although they are the gold standard, we know, as above, that progression occurs even without relapse and that other tests can provide essential evidence of that progression. Although MRIs will never be eliminated, if patients had the ability to self-test and have access to more disease measures, would the more constant and consistent picture of their disease progress eliminate some of the nerves?
Answering the Question
So are apps the solution to access issues in MS care?
The idea that apps might step in and fill some of the gaps in MS care is not new. One of the top concerns is adoption. The authors of the earliest International Journal of MS Care study on apps and MS care, the 2019 “Toward Digital Self-Monitoring of Multiple Sclerosis: Investigating First Experiences, Needs, and Wishes of People With MS,” found that “Thus far, there has been low adoption of digital self-monitoring technologies by patients with chronic diseases, which can partly be explained by an inappropriate fit of these technologies with patients' daily lives and the high patient burden associated with using digital self-monitoring.”7 Five years later, the sentiment is echoed and expanded in a blog post on the site of the Patient Reported Outcomes for Multiple Sclerosis (PROMS) organization. Angela, a member of the PROMS engagement coordination team, shared, “If a noninvasive, personalized way of assessing our condition over time, not just in a 15-minute, biannual appointment, were available—and used by health care teams, with approval and reimbursement from payers—there is no burden too onerous to prevent us from using and engaging with it.”8 All parties need to buy in: patients, clinicians, researchers, and payers. But if they did, the connection between them would be a boon for MS care.
As the quote from the IJMSC paper above points out, apps need to be accessible and easy for patients to engage with them. The Floodlight Open paper cites a 2013 study from Germany that found that 95% of individuals with MS had a smartphone,5 so device access would not seem to be an issue in similar circumstances. Although, adherence and persistence matter more for utility and the findings were more mixed. Floodlight Open tested adherence and persistence in a study cohort where the app was, for the most part, unconnected to clinical care or study related. The finding was that “a considerable proportion of participants (38%) ceased to participate after 1 week.”5 The part of the cohort that had the highest adherence and persistence was a group of Danish participants where use of the app was connected to a study.
Perhaps another consideration to increase user adherence and persistence is gamification. Sharon Stoll, DO, a board-certified neurologist, neurology director of Stoll Medical Group, and assistant professor in the department of neurology at Yale School of Medicine, in New Haven, Connecticut, mentioned this in an IJMSC Insights interview, saying, “A huge difference between this app and a lot of other MS apps…[is that] this one is actually fun to use. It’s gamified…and people definitely want to sign back on and see their next score or if they’ve done better.”9 Stoll is an author of a paper10 in the March/April 2024 issue of IJMSC that showed that Expanded Disability Status Scale (EDSS) scores derived by the BeCare Link MS app had “a 90[%] plus correlation”9 with EDSS scores derived by neurologists.
Another author of the IJMSC paper, Charisse Litchman, MD, FAHS, neurologist and chief medical officer of BeCareLink, cited the fact that apps would increase access to information for patients and doctors alike, thus increasing access to care. She sees apps as an empowerment tool for patients, giving them an ability to self-monitor. “And because, as [MS] therapies get better there are [fewer] relapses, BeCare may actually pick up on changes in EDSS or disability.… [The app suggests] that if you’re greater than 2 standard deviations, you contact your clinician. [And] the patient can print out the report and/or email it directly to their doctor.”9
The access benefits are similar for clinicians. Litchman continued, “One of the main benefits [of the] BeCare [app] is for all of those patients who are in neurologic deserts. [It] really acts as a walking EMR [electronic medical record] for their neuro disease. They can send their information to somebody…up at Yale or up at Brigham [and Women’s Hospital] and they know they have all that information.”9 Stoll agreed, adding, “Especially in this country where we don’t have socialized medicine, where not just every state is its own separate IT system, but every institution is its own separate system, [and] you can’t share records with patients from 1 health care system to another.”9 Litchman concluded saying, “[T]he app is even more important for non-MS specialists. Over 75% of patients with neurologic disorders aren't seen by a neurologist. Patients with chronic neurologic disorders are being treated by their primary care doctors.”9 An app could become a more accessible, more transferrable EMR and help treating doctors know when they needed to seek a more specialized consult for their patients.
Opportunities and Challenges Ahead
In an entry on his blog, Gavin Giovannoni, MBBCh, PhD, FCP, FRCP, FRCPath, chair of neurology at the Blizard Institute of Cell and Molecular Science at Barts and the London School of Medicine and Dentistry at Queen Mary University of London in the United Kingdom, wrote of his vision for the future of MS care: We must figure out how to “truly democratize knowledge, break down barriers between HCPs [health care professionals] and pwMS [people with MS], empower pwMS to ask the right questions and focus on what really matters in the management of MS…(1) improved outcomes, (2) better quality of life, (3) reduced health care costs, (4) greater efficiency and (5) equality of access.”11 In a comment following the post, a reader, Jane Shanahan, agreed, saying, “If you could wave a wand and join up all the dots with regards to care for MS—thus linking all the different HCPs needed to support a pwMS and this being linked to your own personal care through the hospital/clinic—I think you might be on to something.”11
Although integrating apps into routine MS care and monitoring seems promising amidst the rapid integration of technology into daily life, several challenges persist. They may be a promising solution to access challenges, but their adoption remains a concern, necessitating buy-in across the board from patients, clinicians, researchers, and payers. If overcome, though, the connections facilitated by apps between all concerned in the field could significantly enhance MS care, improving outcomes, quality of life, and access while reducing health care costs and increasing efficiency. Thus, while challenges persist, the potential of apps to democratize knowledge, bridge gaps in care, and empower clinicians and individuals with MS holds promise for the future of MS management.
