Content

Issues

Research

Permissions

Community Content

Videos and Multimedia

IJMSC Awards

For Authors

Information for Authors

Manuscript Submission

Patient Consent Form

About IJMSC

Aim and Scope

Ethics

Editorial Board

Peer Review

Contact Us

Home

Advertising

IJMSC

1rem

Authors

Access to and Use of Clinical Services and Disease-Modifying Therapies by People with Progressive Multiple Sclerosis in the United Kingdom

Patients with multiple sclerosis (MS) were vulnerable to the effects of physical inactivity during the COVID-19 pandemic. As patients returned to in-person visits, providers reported seeing increased weakness, balance issues, falls, worsening pain, and spasticity. Social isolation also contributed to increased stress, depression, and anxiety. This study explored whether attending virtual wellness programs was associated with improvements in standard quality of life questionnaire scores for patients with MS.

The purposive convenience sample consisted of 43 patients in the treatment group and 28 in the control group. Patients in the treatment group attended 2 monthly programs for 6 months and completed a demographic questionnaire, the 36-Item Short Form Health Survey (SF-36), the Modified Fatigue Impact Scale, and the Medical Outcomes Study Pain Effects Scale (PES). Patients requested additional topics, resulting in 5 additional programs. The control group consisted of patients who chose not to attend the programs but agreed to complete the questionnaires.

In comparing questionnaire responses (6 months minus baseline) among the participants in the treatment group, an association was found between higher meeting attendance and improvements in emotional well-being (

 = .011), mindfulness on the SF-36 pain scale (

The results of this study suggest that a virtual wellness program may provide beneficial emotional support, physical exercise, and health promotion activities resulting in improved quality of life in people with MS. In addition, mindfulness and exercise programs may be beneficial in pain management.

From the Department of Neurology, University of Pennsylvania, Philadelphia, PA, USA (DJ, NG, VZ); the Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA, USA (SMW); and Philadelphia, PA, USA (ER). 

 Vanessa Zimmerman, MSN, Department of Neurology, University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104, USA; 

: vanessa.zimmerman@pennmedicine.upenn.edu.

 The authors declare no conflicts of interest.

 Ms Weinstein provided statistical support and is funded by the National Science Foundation Graduate Research Fellowship Program. External speakers were paid honoraria supported by a grant from the Board of Women Visitors of the Hospital of the University of Pennsylvania and funding earned through successful completion of annual projects with the Neuroscience Service Line of Penn Medicine.

 Aspects of this study were presented in poster form at the Consortium of Multiple Sclerosis Centers Annual Meeting; October 25-28, 2021; Orlando, Florida.

Multiple sclerosis (MS) is a common, chronic, lifelong, unpredictable, and potentially highly debilitating neurologic condition that occurs more commonly in women than in men. It strikes most often in young adulthood but can even start in childhood and adolescence. There are nearly 1 million people living with MS in the United States.

The COVID-19 pandemic affected every activity of the Penn MS and Related Disorders Center at the Hospital of the University of Pennsylvania. Clinic visits were initially halted and then switched to a virtual format. Many patients were isolated by stay-at-home orders. As some patients began to return to in-patient clinic visits, providers found that deconditioning related to limited activity had resulted in increased weakness, spasticity, and balance issues, as well as increased pain. Patients also reported increased stress, depression, and anxiety.

For many, the pandemic created a wide range of long-term challenges, which are correlated with worsening neurologic symptoms in patients with MS.

 Although patients were encouraged to self-isolate for protection from the virus, for some it posed a threat to their physical and mental well-being

 and resulted in reduced quality of life.

 In 1 online survey, researchers found that 50% of patients with MS either reduced or ceased their physical activity during the pandemic and 32% reported that their fitness level had decreased.

To help patients with MS during the pandemic, Penn Center providers decided to offer virtual wellness programs. People with MS are becoming more interested in the concept of wellness,

 and there is evidence to suggest that in addition to disease-modifying therapies, lifestyle strategies that support wellness can help mitigate disease-related complications and comorbidities.

Limited information on virtual wellness programs was found in the literature. Much of the current research has studied programs by businesses, academic institutions, and health care systems for employees and/or students. Initiated during the pandemic, studies dealing with patient populations, including patients who are disabled,

 showed that virtual programs were effective to some degree and were well received.

The National Multiple Sclerosis Society (NMSS) has a Wellness Research Working Group to develop top research priorities.

 Through “social media listening,” 3 topics of interest to patients with MS were identified: diet, exercise, and emotional wellness; essentially, information they can use themselves to promote wellness.

 The researchers focused on these areas when planning the virtual programs.

This exploratory study had a purposive convenience sampling design of patients with MS from the Penn MS and Related Disorders Center at the Hospital of the University of Pennsylvania. No other criteria were required for study inclusion. The study was reviewed by the Office of the Institutional Review Board (IRB), University of Pennsylvania, and received exempt status. The IRB reviewers did not feel that a signed consent form was necessary; however, they suggested that study patients receive a 1-page consent statement that outlined the research purpose, their voluntary participation, study risks/benefits, and study expectations. This IRB-approved consent statement was sent to patients by secure email along with the study invitation.

The recruitment period was only 2 months due to constraints, including pandemic-related stay-at-home restrictions and lack of vaccine availability. In addition, the researchers hoped to intervene with the virtual wellness program when it was most needed and to concurrently collect data and evaluate the program’s potential positive effect on participants. During the 2-month recruitment period, the providers in the MS clinic, including physicians, nurse practitioners, and nurses, were asked to mention the wellness programs and study to the patients seen during that time, either in the clinic or virtually. All patients who expressed an interest or who might benefit from the programs were sent a secure email invitation and the consent statement from the nurse or social worker; 239 emails were sent. Patients were offered the option of being a part of the treatment group or the control group.

The final sample consisted of 43 patients in the treatment group and 28 patients in the control group. Patients in the treatment group were asked to attend 2 monthly wellness programs for 6 months and to complete a demographic questionnaire, the 36-Item Short Form Health Survey (SF-36), the Modified Fatigue Impact Scale (MFIS-5), and the Medical Outcomes Study Pain Effects Scale (PES) at baseline, month 3, and month 6. Patients in the control group chose not to attend the programs but agreed to complete the same questionnaires at the same intervals.

Baseline demographic and patient characteristics are summarized in 

, available online at IJMSC.org. Of the 43 patients in the treatment group, 39 (90.7%) were female and 4 (9.3%) were male; the mean ± SD age was 56.79 ± 10.80 years. Thirty-eight patients (88.4%) were White, 4 (9.3%) were Black, and 1 (2.3%) was Hispanic. Forty-one participants (95.3%) had an education beyond high school, and 18 (41.9%) had a graduate degree (beyond the bachelor level). The mean ± SD number of years since diagnosis was 15.60 ± 10.45, and 22 patients (51.2%) felt isolated. Of the 28 patients in the control group, 20 (71.4%) were female and 8 (28.6%) were male; the mean ± SD age was 49.46 ± 10.29 years. Twenty-two control participants (78.6%) were White, 2 (7.1%) were Hispanic, 2 (7.1%) were Asian American, 1 (3.6%) was Black, and 1 (3.6%) was Native American. Twenty-seven control patients (96.4%) had an education beyond high school, and 17 (60.7%) had a graduate-level degree. The mean ± SD number of years since diagnosis was 12.86 ± 7.11, and 15 control patients (53.6%) felt isolated.

The wellness programs were presented virtually via video conferencing (Zoom or BlueJeans) with links provided in an individual email. When the participants logged on, they could choose to mute their video and/or audio if they wanted to protect their anonymity, but many interacted with the speaker or one another. Patients provided ample messages with positive feedback and requests for different topics. As a result, there were 5 additional programs added to the schedule; in total, there were 17 programs over 6 months. An exercise program was offered 6 times and a mindfulness program was offered 3 times.

After finding significant baseline differences between the treatment and control groups due to lack of randomization, an insufficient sample size to adequately adjust for confounding in the treatment group assignments, and the exploratory nature of this study, the analysis focused on potential differences within the treatment group: evaluation of whether frequency of virtual wellness program session attendance (eg, total number, number of session subtype) was associated with differences in questionnaire response changes. Given the exploratory nature of the study with limited data points, it was decided to limit the scope of the analysis to the 6-month end point. Baseline and 6-month measurements for both groups are presented in 

. Differences across the strata were tested using a Jonckheere-Terpstra test for trend or a 2-sample 

 test, depending on the number of strata being compared.

Changes in questionnaire responses were first analyzed stratified on the total number of meetings attended. Of the 43 participants in the treatment group, 15 (34.88%) attended 0 to 4 total meetings, 14 (32.56%) attended 5 to 9 meetings, and 14 (32.56%) attended 10 to 17 meetings. A Jonckheere-Terpstra test suggested that higher meeting attendance was associated with improvement in emotional well-being (

According to research performed by the NMSS, exercise is a topic of interest for patients with MS.

 Exercise is important for overall health and well-being and is also beneficial in managing MS symptoms, including cardiovascular, strength, bowel/bladder function, fatigue, mood, cognitive function, bone density, and flexibility.

 Exercise can also be beneficial in reducing pain.

 Pain is a common symptom for patients with MS

 and is associated with fatigue, depression, anxiety, and reduced mental health quality of life.

A virtual exercise program was offered each month for a total of 6 sessions. Thirty-five patients (81.4%) in the treatment group attended at least 1 session. The programs were presented by a certified personal trainer who also has MS. Her programs were based on NMSS evidence-based exercise and lifestyle physical activity recommendations for patients with MS throughout the disease course.

 She structured the programs so that patients could perform the exercises from a sitting or standing position.

After stratifying patients into 2 groups (23 [53.5%] who attended 0–2 exercise sessions and 20 [46.5%] who attended 3–6 exercise sessions), it was determined that those who attended 3–6 exercise programs had significant improvement compared with baseline on the PES (

). Exercise program attendance was not associated with improvement on any other outcome measures.

There is also evidence that the practice of mindfulness can be helpful in pain relief, but little work has been done in relation to patients with MS.

 One study conducted a cross-sectional survey to evaluate the association between pain and mindfulness in patients with MS. The results suggested that there is a clinically meaningful and highly significant relationship between mindfulness and pain interference in MS.

 A mindfulness program was offered a total of 3 times during this study.

Differences in questionnaire response changes were also analyzed depending on the number of virtual wellness program subtypes attended. Thirty patients (69.8%) in the treatment group attended at least 1 of the 3 mindfulness sessions. After stratifying patients into 2 groups (23 [53.5%] who attended 0–1 mindfulness sessions and 20 [46.5%] who attended 2–3 mindfulness sessions), it was found that patients who attended more mindfulness programs had a significant level of improvement compared with baseline on the SF-36 pain scale (

). The researchers did not find significant associations between mindfulness program attendance and any other questionnaire responses.

Diet is another key topic requested by patients with MS to promote wellness.

 Although there is no “best diet,” maintaining a healthy diet promotes the overall health and well-being of patients with MS.

 A registered dietitian who also has MS presented a healthy approach to nutrition for people living with MS and addressed questions about specific diets.

Movement is paramount to maintaining mobility, so in addition to the exercise programs, 3 other movement classes were offered. In 1 session, an occupational therapist provided suggestions to address common functional problems that patients with MS face.

 There was also a yoga program led by a trained yoga instructor who has MS. There is evidence that yoga benefits people with MS by reducing depression, decreasing pain and fatigue, increasing lung capacity, improving strength and flexibility, decreasing stress, and promoting muscle relaxation, lower blood pressure, and an improved quality of life.

 Finally, a dancer with MS gave a session. She performed a ballet she choreographed chronicling her recovery from an MS exacerbation using the walker she required at that time and the neurologic examination comparing her weak side with the unaffected side. The results of 1 meta-analysis suggest that dance movement therapy decreases depression and anxiety and increases quality of life and interpersonal and cognitive skills.

 In recent years, research suggesting positive effects from dance therapy on patients with MS has increased.

Sleep difficulties are common among people living with MS, and 1 study found that patients with MS had worse sleep quality during the pandemic than the general population.

 A University of Pennsylvania sleep medicine physician presented “Lessons from a Sleep Physician: Falling Asleep and Staying Asleep, Critical Lessons for Battling MS Fatigue.” Contributing factors to sleep disturbance include vitamin D deficiency; adverse effects from medications, including disease-modifying therapies, steroids, and fatigue medications; fatigue-related daytime napping; decreased exercise related to fatigue or MS-related disability; emotional changes such as stress, anxiety, or depression; and other MS symptoms, such as restless legs, pain, urinary and bowel symptoms, and temperature dysregulation.

 The speaker provided an interactive program on the causes of sleep deprivation and ways to foster quality sleep.

Emotional wellness is also a topic of interest to patients with MS.

 Patients who attended more meetings in this study had a significant level of improvement compared with baseline in emotional well-being (

 = .038) (Figure 1A). A program was presented by a comedian with MS about living with MS. Laughter can be beneficial as it has been found to relieve stress and tension, improve the immune system, increase personal satisfaction, and improve mood.

 In planning the program, the researchers worried whether a comedy program would be well received and/or beneficial to the patients. The comedian was also concerned about conducting a virtual comedy program where the microphone of many participants would be muted; however, the program was very successful and patients offered positive responses in the chat box: “OMG! I needed this so much!!” “Best hour I’ve spent in way too long!! Thank you!!” (

The nurse practitioners from the MS center provided a program on MS symptoms. Because of their training and expertise, they understand the complexity of MS treatments, including treatments for symptom management.

 The program was presented in an open forum that allowed for patient questions and comments on ways to deal with MS symptoms.

Finally, there was a program provided by a primary care provider, an important role in the multidisciplinary team since they will likely see the patient more frequently than the neurologist in a years’ time.

 The primary care provider stressed that the patient with MS must also take care of non-MS issues to maintain overall wellness.

The results of this exploratory study suggest that virtual wellness programs may be a beneficial tool for patients with MS, whether isolation is caused by a pandemic or by disability. The programs provide information and activities to address the physical effect of deconditioning, as well as group interaction and support to address social isolation.

Ten of the 17 programs were presented by individuals who have MS, which may have contributed to the very active group interaction, as well as the positive responses: “I wanted to thank you for the wonderful programs. They have really helped me and have been uplifting. What I really like about the programs is that the presenters also have MS. I was diagnosed in 2011 and have pretty much kept it a secret. The programs are helping to decrease some of my anxiety and worries about somebody at work finding out that I have MS. Hearing the presenters share their stories is encouraging me to also want to open up and share with other people in my life. The programs have been inspirational and I am so happy I was able to join.”

The pandemic provided a perfect opportunity to explore the concept of virtual wellness programs. One researcher found that online opportunities for physical activity for patients with MS were a valued option and recommended that such programs be continued after the pandemic.

 Many of the participants in this study continue to attend the 2 monthly virtual wellness programs that have continued for the patients with MS beyond this study.

The positive feedback the researchers received in this study, both verbally and in writing, confirmed that the wellness programs were valuable to the participants. A patient wrote, “I’ve lived with MS for over 20 years, and the Penn MS Wellness Group has absolutely been the most positive, helpful, caring experience for me in terms of my health care team going out of their way to provide meaningful, relevant, helpful, and regular programming while also creating a supportive, safe, warm community made up of patients, caregivers, and medical providers. The group … provides insight that has helped me live better with MS. Thank you so much for this wonderful group!”

This study has several limitations. The study design changed because (1) the researchers could not compare the 2 groups due to lack of randomization, (2) additional programs were added by patient request, and (3) the scope of the analysis was limited to the 6-month end point. Many of the members of the sample were older white females who were highly educated, with most having degrees beyond high school. Therefore, the findings cannot be generalized to a more diverse population. Vaccine availability during the study may have contributed to the improvement of patient well-being.

The results of this study suggest that a virtual wellness program can be beneficial to patients living with MS. Interventions on diet, exercise, and emotional wellness may be associated with improved MS symptoms, as well as improvement in overall health and quality of life. The study also suggests that mindfulness and exercise programs may be beneficial in pain management. A randomized trial is warranted to further study effectiveness.

Impact of a Virtual Wellness Program on Quality of Life Measures for Patients Living With Multiple Sclerosis During the COVID-19 Pandemic

Telemedicine provides a gateway to specialty care that, otherwise, patients with multiple sclerosis (MS) could have difficulty accessing. Studies have shown that telemedicine provides a valid alternative to in-person visits. There are limited data on the strengths and limitations of telemedicine from the perspective of MS providers.

After reviewing the literature and pilot testing questions about telemedicine in provider focus groups, a 34-question survey was created on the Qualtrics web platform. A stratified sample of MS providers throughout the United States was recruited to participate. The survey initiated in November 2019 and closed in November 2020.

Survey participants (N = 94) included neurologists (43.0%), advanced practice providers (28.0%), nurses (14.0%), mental health providers (7.0%), social workers (3.0%), rehabilitation providers (4.0%), and pharmacists (1.0%). Clinical video telemedicine (CVT) was the most commonly used platform, and 76.6% of respondents indicated that they used telemedicine to care for patients with MS. As a result of the COVID-19 pandemic, the rate of telemedicine use increased from 44.4% to 84.2%. Most health care providers (93.0%) were “very satisfied” or “somewhat satisfied” with their most recent telemedicine visit, and 94.4% of providers reported a desire to continue using telemedicine, although 84.6% found it difficult to perform a full examination.

There was a large uptick in the use of telemedicine when the COVID-19 pandemic forced clinics to cease in-person visits. Providers predominantly used CVT; store-and-forward telemedicine and remote patient monitoring have fewer technical issues than CVT and seem to be underused.

From the Department of Neurology, Johns Hopkins University, Baltimore, MD, USA (PK); Veteran's Administration Multiple Sclerosis Center of Excellence-East, Baltimore, MD, and Washington, DC, USA (HM, ZM, SJ, MW); Department of Neurology, George Washington University, Washington, DC, USA (MW). 

 Peter Keszler, DO, 7315 Wisconsin Ave, Ste 700, Bethesda, MD 20814, USA; 

Thanks to the health care providers who participated in the surveys and responded to the promises and challenges of telemedicine.

The authors declare no conflicts of interest.

 This study was supported by the National Multiple Sclerosis Society (HC-1610-25978) and the US Department of Veterans Affairs Multiple Sclerosis Center of Excellence.

 Preliminary data from this study were presented as part of an abstract poster at the Americas Committee on Treatment and Research in MS Forum 2021 Virtual Conference; February 25-27, 2021.

It is often difficult for patients with multiple sclerosis (MS) to access specialty care; major barriers include geographic distance from providers, traveling restrictions due to neurologic disability, and limited or partial health insurance coverage.

 Access is further impaired by inclement weather and health-related concerns (eg, COVID-19, MS flare). One study showed that 30% of patients with MS do not see a neurologic specialist for their care.

 Patients who are seen by a neurologist are more likely to be prescribed a disease-modifying treatment and receive multidisciplinary services,

Telemedicine, the use of technology to provide access to clinical care when distance separates patients and providers,

 could allow for broader and more convenient access to MS specialty care. There are several types of telemedicine: (1) clinical video telemedicine (CVT), in which a provider and patient communicate through an audiovisual platform (eg, Zoom [Zoom Video Communications, Inc]); (2) pure audio real-time interface (eg, performing telephone surveys); (3) store-and-forward telemedicine, in which patient test results (eg, cognitive tests, optical coherence tomography) are stored and then reviewed by a remote clinician; and (4) remote monitoring, which includes wearing a device or using an app that sends real-time data to a remote provider.

The COVID-19 pandemic forced a shift in how practitioners provided care due to the need for social distancing to decrease potential exposures for a patient population that is at higher risk

 than the general population. Providers and the National Multiple Sclerosis Society issued guidance for using telemedicine to help reduce this risk.

 This was made possible by health insurance providers relaxing restrictions on reimbursement for telemedicine services, which had resulted in limited use.

 Centers for MS quickly made plans to transition to telemedicine platforms.

 As a result, there was a massive rise in the use of teleneurology, with virtual visits skyrocketing and in-person visits plummeting.

Most studies looking at the use of telemedicine in MS care have been single-center studies with small sample sizes. There are limited data on the strengths and limitations of telemedicine from the perspective of MS providers. Designed and begun before the rise of COVID-19, this study aimed to examine the views of a large, diverse group of MS care providers on telemedicine. We were fortunate to capture the pre–COVID-19 pandemic period as well as the pandemic period in the survey.

The survey questions were developed by evaluating the current telemedicine literature

 and previous surveys of telemedicine in MS care.

 Questions were pilot tested for readability, relevance, and completion time with a group of 10 MS care providers in the Washington, DC, region. Once finalized, the questions were uploaded to the Qualtrics web platform (Qualtrics). The survey consent, platform, and distribution were approved by the Washington, DC, Veterans Affairs Medical Center institutional review board.

The study team sampled providers from the 4 US Census regions by targeting major MS programs in these regions along with MS provider groups (eg, the International Organization of Multiple Sclerosis Nurses). Major MS programs were tertiary referral centers and part of the Consortium of Multiple Sclerosis Centers. The MS provider groups were composed of the core subspecialists that care for patients with MS. We sampled several different types of MS programs (eg, academic, private practice, government) in different geographic areas of the United States. The MS health care provider sample included (1) specialty and general neurologists, (2) rehabilitation specialists (eg, physiatrists, physical and occupational therapists), (3) advanced practice providers (APPs), (4) nurse specialists, and (5) other specialty providers (eg, psychologists, psychiatrists, social workers). The goal was to assess a broad national sample of MS health care providers to determine use patterns and views of telehealth.

The survey was composed of 34 questions and was distributed using a secure Qualtrics platform weblink to individual email addresses (

, all supplemental materials are in a PDF at the end of the online article). Original emails were sent to the practice as a whole, and then follow-up emails targeted individual providers; 2 or 3 reminder emails were sent, which increased participation 25% on average. The actual response rate is unclear because the number of people who received the initial group email is unknown; depending on the practice, it seems to have ranged from approximately 50% to 100%. The MS health care providers completed the web-based survey between November 20, 2019, and November 15, 2020. Responses were then stratified based on those who completed the survey before March 2020 (pre–COVID-19 pandemic) and during and after March 2020 (peri–COVID-19 pandemic).

The web-based survey data contained no unique identifiers. Survey responses were analyzed using Qualtrics software and SAS version 15.2 (SAS Institute Inc). Participants were not offered compensation or incentives to participate in the survey.

The survey was opened by 105 people; 94 completed the full survey, representing a diverse group of provider types (

). The respondents’ specialty areas were as follows: neurologist (n = 40; 42.6%); APPs (n = 26; 27.7%); nurse (n = 13;13.8%); psychologist, neuropsychologist, or psychiatrist (n = 7; 7.4%); social worker (n = 3; 3.2%); physiatrist (n = 2; 2.1%); physical therapist or occupational therapist (n = 2; 2.1%); and pharmacist (n = 1; 1.1%). The breakdown by US Census region was balanced. The providers had been in practice for a mean ± SD of 17.5 ± 12.1 years (range, 1–49 years).

In terms of use, 72 (76.6%) of the 94 respondents indicated that they had used telemedicine to evaluate patients with MS. Of those who had used telemedicine, a mean of 65.5% of their practice was dedicated to telemedicine. The most common platform for telemedicine was CVT (87.5%); 70.8% had used pure audio (ie, telephone counseling or surveys), 9.7% had used store-and-forward telemedicine, and 1.4% had used remote patient monitoring. Most providers used CVT in nonclinical settings (ie, from home) (82%) vs in clinical settings (ie, remote clinic room) (7.9%), with 11.1% of providers seeing patients in both settings. All providers had telehealth encounters in their same state, with a large portion also seeing patients across state lines (75.0%). A small proportion of MS providers even saw patients internationally (4.2%).

Overall, 93.0% of respondents were “very satisfied” or “somewhat satisfied” with their most recent telemedicine visit, 4.2% were “neither satisfied nor dissatisfied,” and 2.8% were “somewhat dissatisfied.” Respondents stated that they would “definitely” (73.2%) or “probably” (21.1%) like to continue using telemedicine, with 1.4% “not being sure” and 4.2% “probably not wanting” to use telemedicine again (

Providers reported that the benefits of telemedicine were improved access to services or specialists for patients (88.2%), greater convenience for providers (57.0%), lower costs for providers (29.0%), and better interactions with patients (28.0%) (

). Among the write-in advantages for telemedicine, the most common answer was greater convenience for patients (28.0%). Alternatively, 3.2% of providers responded, “Telemedicine would not provide any advantages for me,” and 2.1% were not sure what advantages there were.

Among the challenges with telemedicine, 84.6% of providers felt that it was difficult to perform a full examination using a remote platform (Figure 1). Other disadvantages reported were difficulties communicating with patients due to technological issues (60.4%), concerns about privacy and security (26.4%), the high cost of telemedicine equipment and support or lack of health insurance coverage (22.0%), and the inability to view laboratory test results (8.8%). A small group of providers felt that telemedicine would not provide any disadvantages for their practice (2.2%).

Pre–COVID-19 and Peri–COVID-19 Pandemic Differences in Telemedicine 

No surveys were completed between December 24, 2019, and March 17, 2020, providing a clear divide between respondents before the COVID-19 pandemic in the United States and those during the COVID-19 pandemic. The first case of COVID-19 was diagnosed in the United States in February 2020, but the response to the pandemic did not begin until March 2020.

 The last survey response was completed in November 2020. There were 18 survey responses before the start of the pandemic and 77 during the pandemic.

Looking at the data collected before vs during the COVID-19 pandemic, there was a dramatic rise in provider use of telemedicine, from 44.4% to 84.2% (Figure S3). During the peripandemic period, providers also dedicated more of their practice to telemedicine: 72.4% vs 14.4% before the pandemic (

). During the peripandemic period, providers were more likely to be unsatisfied with their most recent telemedicine visit (3.1% vs 0%) and to experience technical difficulties (89.3% vs 57.1%) and were less likely to be confident in their findings via telemedicine (21.9% vs 62.5%), to have telemedicine training (78.1% vs 87.5%), and to want to continue using telemedicine (93.8% vs 100%).

Provider Similarities and Differences in Telemedicine

There do not seem to be differences in satisfaction with the most recent telemedicine visit or desire to continue using telemedicine in the future among different provider types. There are differences in use of telemedicine and percentage of practice dedicated to telemedicine: neurologists, APPs, and nurses had similar use (75%–80%) and practice dedication (65%–70%); psychiatrists/psychologists had notably lower telemedicine use (57.1%) and practice dedication (43.8%). Neurologists were less confident in their evaluations via CVT compared with their in-person evaluations, with 24.2% reporting that they are not as confident; 9.5% of APPs were less confident as well, but no other provider type cited less confidence.

Practitioners who did not use telemedicine were more likely to be from the South. The low rate of telemedicine use persisted during the pandemic: in the South, telemedicine use was 70.8%, compared with 89.5% in the Northeast and the West and 92.9% in the Midwest. When prepandemic numbers are included, the south’s telemedicine use drops to 59.5%. The South also had the lowest percentage of practice dedicated to telemedicine, 42.7%, compared with the Northeast’s 70.9%, the Midwest’s 84.3%, and the West’s 82.4%.

There did not seem to be a strong correlation between the number of years in practice and the use of telemedicine or percentage of practice dedicated to telemedicine. In fact, the highest percentage of telemedicine use was among those with more than 30 years practicing medicine (90.9%), slightly above those who had been in practice 5 years or less (89.5%). The lowest use of telemedicine was among providers who had been in practice 6 to 10 years (61.5%); those practicing 21 to 30 years (70%) and 11 to 20 years (74.2%) were closer to the average.

This survey of 94 MS providers from around the United States gives a glimpse into their telemedicine use and their opinions regarding its benefits and limitations. Overall, most MS providers are comfortable using CVT and other types of telemedicine to evaluate patients. Telemedicine’s strengths included improved access and convenience and lower costs. Challenges were interpreting remote examinations, communicating with patients, and technical difficulties. This survey assessed MS providers before and during the COVID-19 pandemic; given the exponential growth in the use of telemedicine, provider views on its benefits and disadvantages are even more important.

Previous surveys of all physician types showed that telemedicine was vastly underused, with a 2016 study showing that only 15.4% of providers had used this option. Neurologists showed slightly better than average use compared with other physicians at 17.4%.

 Similar to the present study, CVT was the preferred mode of telemedicine, with store-and-forward telehealth and remote patient monitoring rarely used.

A recent article showed most MS providers (95.1%) using telemedicine in mid-2020, with almost half dedicating more than 50% of their practice to remote encounters.

 The overall higher percentage of telemedicine use but lower percentage of time dedicated to telemedicine compared with the present study may be accounted for by our longer period of data collection, which included earlier parts of the pandemic. This report did not capture data on prepandemic use of telemedicine.

Patients have expressed enthusiasm about using mobile and wearable devices to track clinical outcomes,

 and, as this study shows, this type of telemedicine tends to have fewer technical difficulties than CVT. Despite these advantages, there is limited clinical use of these types of telemedicine.

Among practitioners who said they were not sure whether they would like to continue using telemedicine or would probably not want to continue using telemedicine, 3 were neurologists and 1 was an APP. They had been in practice for a mean ± SD of 25.3 ± 13.9 years (range, 14.0–49.0 years). All 4 practitioners indicated that they had received training in telemedicine and felt very comfortable with computers, and 3 stated they that were not as confident in their evaluations. They were either “somewhat satisfied” or “neither satisfied nor dissatisfied” with their most recent telemedicine visit. Two were from the South, 1 was from the Midwest, and 1 was from the West.

Of interest, satisfaction with the most recent telemedicine visit did not seem to correlate with the desire to continue using telemedicine. Of the 6 providers who said that they were “somewhat disappointed” or “neither disappointed nor satisfied” with their most recent visit, 2 said that they would definitely want to continue using telemedicine, 2 said that they would probably want to continue, and 2 said that they would probably not want to continue.

Regional differences may be explained by differing loca government levels of pandemic restriction on travel and social distancing. Although other regions imposed strict lockdowns, the South did not completely restrict movement between states and within businesses. This may account for the reduced use of telemedicine in the South. In addition, telehealth policies vary between states. Many states in the south did not pass as many comprehensive laws to expand telemedicine coverage.

 This is consistent with the idea that the increase in telemedicine was due to necessity during the COVID-19 pandemic.

There are several differences in the pre–COVID-19 pandemic and the peripandemic responders. First, the peripandemic responders spent much more of their practice performing telemedicine, reported a higher percentage of technical difficulties, were less confident in their ability to assess and treat patients compared with in-person interactions, and had less telemedicine resources/support. The most likely explanation for these differences between the prepandemic group and the peripandemic group is that those already using telemedicine before the onset of the pandemic had chosen to make this a part of their practice and were comfortable with the technology. These clinics had the support, contingency plans, and tools necessary to run their operations smoothly, whereas the peri–COVID-19 pandemic group included providers who were forced into telemedicine by default. In addition, the surge of telemedicine use likely taxed the information technology infrastructure, and peripandemic providers were spending a far greater proportion of their practice using telemedicine. Teleconferencing fatigue is an often-experienced phenomenon that could explain some practitioners’ negative attitudes toward telemedicine.

 Finally, the pre–COVID-19 pandemic group skewed younger with less years of experience in practice compared with the peripandemic group. This age gap may have played a part in why those in the prepandemic group were earlier adopters of telemedicine and felt more comfortable with its implementation.

There are several recent studies demonstrating how telehealth has been successfully used in various aspects of MS care, including fatigue management

 The use of CVT has been shown to be feasible and cost-effective, and it had high satisfaction ratings from both patients and providers.

 Studies have shown little to no difference between telemedicine and in-person interventions

 and have demonstrated that the Expanded Disability Status Scale evaluation can be successfully and reliably completed via telemedicine.

 In addition, telemedicine has been shown to reduce patient travel burden, lower the indirect costs of missed work, and lower caregiver burden.

The strengths of this study include reaching a diverse pool of providers, not only in scope of practice, but also in geography. We acquired responses from all corners of the United States, representing 24 states and the District of Columbia. We also received input from a multidisciplinary range of MS care providers. Finally, the timing of the start of the study allowed us to collect data before and after the pandemic.

A limitation of this study is the limited scope of health care providers. Although the study sampled a wide range of providers, most were neurologists, APPs, or nurses, with only a few responders from other provider types. As a result, it is hard to compare these other provider types and may account for some of the intergroup differences noted. Moreover, the sample size of the pre–COVID-19 pandemic group is significantly smaller than that of the peripandemic group; a larger sample may have yielded more representative results. The study was designed before the COVID-19 pandemic, but the start date resulted in a limited recruitment period and a small sample before the pandemic onset. Ideally, a larger prepandemic sample coupled with the opportunity to retake the survey after the near universal adoption of telemedicine during the pandemic would have illustrated how provider views on telemedicine changed after increased exposure.

Overall, telemedicine provides a pathway to improve access to high-quality, cost-effective care for patients with MS and their providers. Most providers using CVT were satisfied, and the less technically challenging options of store-and-forward telemedicine and remote patient monitoring can be better used. Except for select clinical situations (eg, neurologic procedures), technological and reimbursement problems can be resolved if the practices and policies instituted during the pandemic are preserved. There is federal and state legislation to continue the current insurance reimbursements and policy allowances for telemedicine.

 Further studies are needed to see how the levels of training and support for telemedicine change as the use of telemedicine increases. To improve patient care and outcomes, the MS community, patients and providers of all types, should work toward nationwide telemedicine funding and interoperability.

Telemedicine and Multiple Sclerosis: A Survey of Health Care Providers Before and During the COVID-19 Pandemic

Although the COVID-19 quarantine required everyone to make lifestyle changes, it may have had especially profound implications for individuals who experience multiple sclerosis (MS)–related fatigue. Individuals with MS who suffer from fatigue are at risk of worsening symptoms and already predisposed to inactivity and social isolation. The objective of this study was to examine the impact of the COVID-19 national quarantine and related restrictions on mental, emotional, and physical fatigue in persons with MS in the United States.

We conducted a survey open to all adults (>18 years) with MS within the United States. The survey gathered demographic information and asked how the COVID-19 pandemic impacted their physical, mental, and emotional fatigue.

The survey was completed by 600 individuals, 478 with relapsing MS and 122 with progressive MS. There was a significant 2-way interaction of time by fatigue type; both physical and emotional fatigue significantly increased during the pandemic (

 <.01) and remained significantly higher after the pandemic than prior to the pandemic (

 <.01). Mental fatigue increased significantly during the pandemic (

 <.01) and although it remained higher, on average, after the pandemic, it was not significantly different from the level before the pandemic.

Individuals with MS experienced increases in physical, mental, and emotional fatigue over the course of the COVID-19 quarantine. Even after the lifting of quarantine restrictions, these levels have not returned to baseline. To adequately address fatigue, it is critical that health care professionals inquire about all types of fatigue in persons with MS.

From the Neuroimaging and Neurorehabilitation Laboratory, Wayne State University, Detroit, MI (ZAR,JF,NEF); the Department of Health Care Sciences, Wayne State University, Detroit, MI (JF, NEF); the Department of Physical Therapy, MGH Institute of Health Professions, Boston, MA (PP,NEF); and the Department of Neurology, Wayne State University, Detroit, MI (NEF). 

Nora E. Fritz, 259 Mack Ave #2324, Detroit, MI, 48201; 

Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS)

; it is present in 64% to 81% of people with MS.

 Fatigue is commonly reported across disease subtypes and at all stages of the disease. It may arise both from central nervous system damage (primary fatigue) or as a result of accumulation of disease burden (secondary fatigue).

 Regardless of cause, fatigue contributes to a downward spiral of inactivity and social isolation

 and is the primary reason for job loss in persons with MS.

To limit the spread of COVID-19, a national emergency was declared in the United States on March 13, 2020, prompting a national quarantine. Although the quarantine forced all residents to make lifestyle changes, it may have had especially profound implications for individuals who experience MS-related fatigue. People with MS who have fatigue are at risk for symptom worsening and are predisposed to inactivity and social isolation. Thus, it is possible that prolonged isolation due to the pandemic may have further diminished physical activity and exacerbated symptoms of MS–related fatigue among people with MS. Indeed, in Turkey, people with MS reported greater fatigue, anxiety, and depression during quarantine than adults without MS

; however, a critical limitation of this study was the cross-sectional assessment of fatigue, anxiety, and depression during the pandemic without directly assessing the impact of COVID-19 on these symptoms. Whether the pandemic affected self-reported fatigue in people with MS is unclear.

In Italy, when compared with the 12 months prior, the 3-month lockdown resulted in perceived worsening of fatigue and overall disability in 32.4% of individuals with progressive MS, worsening depressive symptoms in 30.4%, and a shift to a more sedentary lifestyle, with 47.1% completely stopping exercise.

 Although this study describes COVID-19–related changes in fatigue in people with progressive MS, the study fails to report data on the severity and type of fatigue before or after lockdown. Despite these findings from recent European studies, the impact of the COVID-19 quarantine and the subsequent lifting of quarantine restrictions on fatigue in people with MS in the United States has not been examined. Thus, the objective of this study was to examine the impact of the COVID-19 national quarantine and its related restrictions on the mental, emotional, and physical fatigue experienced by people with MS in the United States.

We conducted a nationwide survey using REDCap (Vanderbilt University), a secure, Health Insurance Portability and Accountability Act–compliant, browser-based database and survey platform. Part of a larger cross-sectional study evaluating fatigue in people with MS, the survey was distributed through the National Multiple Sclerosis Society monthly newsletter and was available from November 1, 2021 through January 30, 2022. The Impact of COVID-19 survey was open to all adults (>18 years) with MS within the United States and took approximately 20 minutes to complete. All study procedures were approved by the Wayne State University Institutional Review Board.

The survey gathered demographic information and asked questions regarding fatigue severity, fatigue impact on daily activities, other MS symptoms, and how the COVID-19 pandemic impacted physical, mental, and emotional fatigue. Physical fatigue was defined as a lack of energy, weakness, or feeling “drained”; mental fatigue was defined as a lack of energy to think, brain fog, or feeling mentally tired; emotional fatigue was defined as feeling emotionally overwhelmed, burned out, or defeated.

 Each type of fatigue was rated using a scale ranging from 0 (no fatigue) to 10 (extreme fatigue). The survey asked for ratings of fatigue in 3 periods: (1) prior to March 2020; (2) March 2020 through May 2021; and (3) June 2021 to the present (ie, the day the survey was submitted), representing before the quarantine, during the quarantine, and the period after the easing of quarantine restrictions. Demographic information included age, sex, race, living situation, and employment status. Additionally, we collected information about current disease-modifying therapy, fatigue medication use, ambulatory status, assistive device use, and comorbidities. Disease severity was characterized with the self-reported Patient Determined Disease Steps (PDDS). The PDDS is a valid and reliable measure of disease disability in MS.

Descriptive data were examined for all variables. Participants who identified as having primary progressive MS or secondary progressive MS were pooled for analysis into a single progressive MS group. This is consistent with the most recent revisions of the MS phenotype descriptions, which consider primary and secondary progressive MS to fall under the umbrella of “progressive MS.”

 To determine whether fatigue levels and fatigue types were significantly different among the 3 time periods, a 2-way analysis of variance (ANOVA) was applied. We explored differences in fatigue across disease subtypes using ANOVA. Tukey post hoc comparisons were used to examine significant interaction effects.

Six hundred individuals living in the United States completed the survey, 478 with relapsing-remitting MS (RRMS) and 122 with progressive MS. Respondents had an average age of 50.9 ±12.5 years. The sample was largely female (82.8%), White (88.1%), living alone (83%), working full- or part-time (53.3%), ambulatory (96%) with relatively low disability (PDDS ≤ 3) (71%), and taking disease-modifying therapies (83.3%). In this sample, only 31.3% reported current use of medications to manage fatigue (

When asked to rate their physical, mental, and emotional fatigue levels, individuals reported greater fatigue (0-10 scale) during lockdown than before lockdown, and although the level of physical, mental, and emotional fatigue declined following the lifting of quarantine restrictions, fatigue levels did not return to previous levels. Physical fatigue was 0.6 points higher, mental fatigue 1.0 point higher, and emotional fatigue 0.8 points higher (

) than before the pandemic. There was a significant 2-way interaction of time by fatigue type; physical fatigue significantly increased during the pandemic (P <.01) and it remained significantly higher after the pandemic than before it (P <.01). Emotional fatigue also significantly increased during the pandemic (P <. 01) and it remained significantly higher after the pandemic than before it (P <.01). Mental fatigue increased significantly during the pandemic (P <.01), and although it remained higher, on average, after the pandemic, it was not significantly different after the pandemic than before it. Before the pandemic, physical fatigue was significantly greater than emotional (P <.01) and mental fatigue (P <.01), which did not differ from each other. During the pandemic, there was no difference between severity of physical and emotional fatigue, and both were significantly greater than mental fatigue. After the pandemic, physical fatigue was again significantly greater than both emotional (P <.01) and mental fatigue (P <.01), which did not differ from each other (

Differences in Fatigue Across Disease Subtypes 

There was a significant 2-way interaction of disease subtype by fatigue type; within progressive MS, there was a main effect of fatigue, such that physical fatigue was greater than mental (P <.01) or emotional (P <.01) fatigue, which did not differ from each other. There were no significant differences in the severity of fatigue subtypes in RRMS. Physical fatigue in individuals with progressive MS was also significantly greater than all types of fatigue in individuals with RRMS (

Impact of COVID-19 on Work and Self-Reported Exercise 

Of those individuals with MS who were employed (53.3%), 78.7% reported that their working arrangement (remote/in-person, hybrid) remained stable from before quarantine through quarantine. Only 20.7% reported some shift from remote back to in-person or to hybrid after quarantine (Table S1). A greater number of persons with RRMS (60.9%) reported working than did the participants with progressive MS (23.8%) (Table 1). Regardless of MS subtype, approximately 50% of individuals with MS reported that the pandemic impacted the amount they exercised; 82.7% reported that the pandemic affected the amount of social interaction they experienced weekly, but only 39.5% endorsed that the pandemic had negatively impacted their relationships (

The main finding of this study was that physical, mental, and emotional fatigue levels of people with MS in the United States increased during the COVID-19 lockdown, and although they declined slightly with the lifting of lockdown restrictions, these levels did not return to previous levels, which represents an overall worsening of fatigue for people with MS during this time period. Compared with the general population of adults aged 45 to 86 years, people with MS report 43% to 60% greater fatigue.

 Although all adults may have experienced a change in fatigue levels as a result of pandemic-related lockdowns, it is possible that the impact on people with MS was even greater. Indeed, 46% of nonhospitalized adults reported fatigue 6 months after having COVID-19. In comparison, all participants in this study reported at least some level of fatigue in the physical, mental, and emotional domains. Current evidence indicates that although fatigue is common in chronic diseases, the prevalence of severe and chronic fatigue is remarkably similar across chronic diseases, except for MS, Parkinson disease, and liver disease, in which the prevalence of severe and chronic fatigue was significantly higher.

A possible explanation for the increased mental and emotional fatigue levels may be changes in routine and responsibilities. The average age of our sample was 50.9 years and 83% lived with another person, so they may have been responsible for caring for young children who were suddenly home from school while also trying to work (53% of the sample was working). The intermingling of tasks and demands on time may contribute to the perception of greater fatigue. A possible explanation for a rise in physical fatigue levels may be related to an increase in sedentary behavior. In this study, individuals reported that the pandemic changed their level of exercise (52%) and social interactions (83%), which may have contributed to leaving the house less and sitting more. In addition, a prior study showed an association between higher self-reported fatigue levels and low activity levels, as well as an increased fall risk and lower quality of life in people with MS.

 Reports of exercising less during the pandemic suggest that before the pandemic, home-based exercise was not the regular mode of most participants. Thirty-three percent of physical therapists reported that aerobic training was reduced or unavailable during the pandemic and, despite 15% of physical therapists reporting increased use of relaxation/mind-body techniques or fatigue management techniques during the pandemic,

 fatigue in our sample still rose. There is an ongoing need for exercise services and skilled therapies at major medical centers; thus, clinicians should provide resources to wellness and exercise programming that can be successfully completed at home.

There was some discrepancy in how pandemic periods were defined. We defined 3 periods: before quarantine, prior to March 2020; quarantine, March 2020 through May 2021; and easing of quarantine restrictions, June 2021 to the present (ie, the day the survey was completed). Other studies either did not define the lockdown or quarantine periods,

 defined a single year (ie, 2020) for consideration,

Elaine H. Coulter, PhD

Articles

Latest Updated Articles