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Telemedicine lets people access health services remotely, usually from their homes, by telephone or by video chat on a smartphone, tablet, or computer screen. It has existed in various forms for decades, but its use expanded tremendously in 2020.
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MS Providers and Patients Satisfied With Telemedicine Experience
Among providers of MS care, telemedicine has generally been well-received. A small study presented at ACTRIMS Forum 2021 found that of the 91 healthcare providers who answered the survey, about 93 percent were very or somewhat satisfied with their last telemedicine visit, and 94 percent reported a desire to continue to use telemedicine. The most common drawback of telemedicine cited was not being able to complete a full neurological exam.
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MS patients receiving care via telemedicine also expressed satisfaction. A study published in January 2021 in the Journal of Patient Experience found that MS patients who received care from the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic in Ohio gave higher ratings to some of the elements of care they received by telemedicine, compared with ratings given by patients who received in-person care.
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Safety and Insurance Coverage Both Important
Patient safety is one reason telemedicine has been a boon for people with MS. “For patient care, telehealth became almost mandatory during the pandemic, especially among the MS population that is on immunomodulating drugs, which potentially can make one more susceptible to infection,” says Mitchell Wallin, MD, a neurologist and director of the Multiple Sclerosis Center of Excellence-East in Washington, DC, which provides care to U.S. Veterans with MS.
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In addition to taking certain disease-modifying drugs, other factors may make individuals with MS more susceptible to serious cases of COVID-19, according to the National Multiple Sclerosis Society. If a person with MS is over age 60, male, obese, or has a progressive form of the disease, the risk of severe illness is greater. Expanded insurance coverage also made telemedicine more accessible and affordable for those with MS.
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Marisa McGinley, DO, staff neurologist at Cleveland Clinic’s Mellen Center for MS in Ohio, says the Cleveland Clinic had been trying out telemedicine visits with MS patients as early as 2016. “We’ve been using telehealth now for almost five years for MS care, but I will say that the pandemic definitely jumped-started things, and we were able to use it more robustly,” says Dr. McGinley.
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“Before the pandemic, very few insurances covered virtual visits, but coverage has been dramatically improved for patients, and so our patients also have better access from that standpoint.”
What a Virtual Exam for Multiple Sclerosis Looks Like
Kalina Sanders, MD, a neurologist in Jacksonville, Florida, has been using telemedicine regularly with her MS patients since the pandemic started and has found that, for the most part, she can conduct a thorough examination using the video camera on a patient’s phone, tablet, or computer. Before starting a session, she asks patients to collect certain measurements, such as their temperature, blood pressure, pulse rate, and respiration rate, if possible.
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“A tele-session is easy for sharing information and then counseling,” says Dr. Sanders. During the session, Sanders says, “I can actually show them their MRI [magnetic resonance imaging] report with images, just as I would if they were sitting in my office.
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So the interchange that I have during a virtual visit, aside from the physical exam, really didn’t change much from when I would see the patient in person.”
Sanders can conduct most portions of an exam through the live video feed and observe physical aspects of a patient that help her evaluate their status. For example, in some people with MS, nerve pathways that control eye movement may be affected, so Sanders will look for irregularities in eye motion.
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She may have an individual stretch out their arms in front of their body with the palms facing straight up, and then close their eyes. If either arm tends to pronate (so that the palm turns inward) and drift downward, this may be what is called pronator drift and a possible sign of motor neuron dysfunction. Sanders will also have a patient adjust the camera on the computer so she can get a clear view of them walking.
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“Seeing a patient walk tells a lot, not only about their coordination and balance, but also about their muscle strength,” says Sanders.
What Parts of MS Care Must Be Done in Person
A full neurological exam has a number of components.
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In May 2020, the Canadian Journal of Neurological Sciences published guidance detailing how almost every aspect of an MS checkup can be carried out virtually. The authors note, however, that the virtual neurological examination cannot entirely replace an in-person examination: “In situations where the clinician is concerned about a serious or potentially harmful neurologic condition, alternative means must be sought to ensure that the patient is assessed urgently in-person.”
Doctors cannot rely on tele-screening to conduct a complete power examination (such as for a neuromuscular consultation), fundoscopy (such as for a headache consultation), and neuro-otology maneuvers (for a vertigo consultation), among others, according to the scientists. MRIs are another type of screening that must be done in person.
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Sanders recommends that her patients get a surveillance MRI approximately once a year. Also, some MS therapies, such as the immunosuppressive drug Tysabri (natalizumab), are delivered via IV (intravenously), and require in-person administration, according to McGinley.
The Patient Perspective A Silver Lining to the Pandemic
As an individual living with MS, Kristen O’Toole has fully embraced telemedicine.
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The 47-year-old uses a wheelchair and doesn’t drive, so telemedicine has been a way to keep up with her regular appointments. Without it, she believes her physical and mental health would have deteriorated over the past year. “I never used telehealth before the pandemic, but then Medicare — my primary insurance — expanded it,” says O’Toole.
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“I really hope that there is a combination of telehealth and in-person appointments moving forward, because telehealth is such a great option for people with MS. I really think that telehealth has been a silver lining of this pandemic.”
O’Toole also appreciates the time she saves with virtual visits, because the process of coordinating with paratransit (a transportation service for individuals with disabilities) and getting to and from an appointment can sometimes take her all day. Through telehealth, she has been able to have productive sessions once a week in her living room with her physical therapist.
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“It has been really good, because I have been able to get the exercise that I need and break the isolation of being quarantined,” says O’Toole. She has also been able to keep telemedicine appointments with her regular doctor, her urologist, and a mental health therapist. Her monthly infusion of Tysabri, however, has required an in-person visit to the hospital.
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“Overall, though, I’ve been able to keep up my mental health and my physical health throughout the pandemic without having to go into the hospital often and risk getting COVID,” she says. RELATED: Telemedicine for Physical Therapy: It Works!
Tips for Acing Your Telemedicine Sessions
Even though the technology for telemedicine appointments is usually fairly straightforward, all of the doctors interviewed for this article encouraged patients to practice logging on in advance.
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“I tell patients to play around with the platform and make sure you know how to get in and use it before your visit,” says Sanders. You should make sure you know how to turn on your microphone and how to adjust the volume, and you should check how you appear on camera. Make sure you have enough light falling on your face so you’re fully visible, and be aware that bright lights or windows behind you will make your face less visible to your doctor.
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Beyond that, here a few more tips from doctors and the American Academy of Neurology:
Have an alternate means to contact your doctor. Even with adequate preparation, technical difficulties can arise.
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Have your doctor’s phone number or email readily accessible during virtual visits so you can make contact by another means, if necessary. Conduct the session in a private area.
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Find a place where you will be uninterrupted during your appointment, and confidential information will not be overheard. Set aside distractions for the duration of the appointment. Turn off radios, televisions, and computer or phone notifications during your virtual visit so you can concentrate on the conversation you’re having with your doctor.
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Consider bringing a second set of ears. Some people like to bring a friend or family member to their in-person doctor appointments, and you can do this virtually, as well, in a number of ways: You can have the person in same room as you, using the same screen; send them a link to the video session so they can attend on their own screen; or record the session and share it afterward.
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Write out your questions in advance. Before entering a telemedicine session, write down any questions you have for your doctor and any issues you want to discuss. If you have been having any new symptoms, for example, make a note of it.
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Have any journal or diary of symptoms and care at the ready. Have any relevant materials ready. Have information regarding your medications on hand, including any possible side effects you may be experiencing.
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If you have information your doctor may not have (such as lab results), have that ready to share as well. Make sure you have any items requested by the doctor for the purposes of the exam. A doctor may ask that you use certain props to assist in the exam, such as a flashlight or weights.
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Prepare to demonstrate your physical abilities. Have an area in the room ready where you can show how you are walking so the doctor can assess your gait and balance. Have any assistive devices (cane, crutch, or walker) accessible.
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Is Telemedicine for MS Care Here to Stay
The Centers for Medicare and Medicaid Services reported in March 2020 that the federal government was giving telemedicine a big assist by expanding Medicare benefits to cover telehealth visits during the COVID-19 outbreak. Currently, Medicare.gov notes that individuals on Medicare pay the same amount for most telehealth services that they would if they got the services in person.
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However, the primary source of health coverage for most Americans is not Medicare but private insurance. Analysis from the Center for Connected Health Policy published at the beginning of 2021 found that most national insurance carriers also expanded telehealth coverage for their commercial health plans on a temporary basis during this public health emergency. But will these changes stay in place after the pandemic is over?
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For now, the fate of telemedicine is unclear, as health insurers, lawmakers, care providers, and patients hash out how to move forward and determine best practices for paying for and delivering this type of care. “I think that payers are likely to continue to cover telehealth better than before the pandemic, but barriers are still likely to come up,” says McGinley. “That said, I think that telehealth is definitely here to stay.”
Healthcare organizations such as the National Multiple Sclerosis Society are urging Congress to pass legislation, such as Telehealth Modernization Act and Protecting Access to Post-COVID-19 Telehealth Act, that will help ensure telemedicine access beyond the pandemic.
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“Our view is that we think the future should include opportunities for both telehealth and in-person visits,” says Bari Talente, executive vice president of advocacy and healthcare access for the National MS Society. “The person and their healthcare provider should decide what’s going to be best for them for any particular care needs.”
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