Paper #1: Providing Person-Centered Care via Telemedicine in the Era of
COVID-19 in Multiple Sclerosis
J. R. Abbatemarco, J. Hartman, M. McGinley, R. A. Bermel, A. Boissy, D. T. Chizmadia, et al.
J Patient Exp 2021 Vol. 8 Pages 2374373520981474
Paper #2: Expanded access to multiple sclerosis teleneurology care
following the COVID-19 pandemic
Marisa P McGinley Lilyana Amezcua, Shauna Gales, William Rowles, Zhini Wang, Wan-Yu Hsu , and Riley Bove
Mult Scler J Exp Transl Clin 2021 Vol. 7 Issue 1 Pages 1–10
Paper #3: Patient's point of view on the use of telemedicine in multiple sclerosis: a web-based survey
D. Landi, M. Ponzano, C. G. Nicoletti, G. Cola, G. Cecchi, A. Grimaldi, et al.
Neurological Sciences, 2021 Jul 20;1-9
Paper #4: Mobile health (mHealth) usage, barriers, and technological considerations in persons with multiple sclerosis: a literature review
E. S. Gromisch, A. P. Turner, J. K. Haselkorn, A. C. Lo and T. Agresta
JAMIA Open 2021 Vol. 4 Issue 3 Pages ooaa067
COVID-19 has changed the care of persons with MS. In some ways care has been more difficult. In other ways the challenges of the pandemic accelerated new and possibly better methods of evaluation and treatment.
One of the most notable changes has been the use of virtual or telemedicine communications via electronic devices and visually enabled apps. While benefits of telemedicine visits are clear (e.g., no need to travel, ability to evaluate the home environment and meeting with caregivers), the challenges are equally clear (difficulties performing a neurologic exam, inadequate internet access, lack of familiarity with electronic devices and apps, and impairment due to neurologic difficulties). These issues are discussed in detail in the cited articles.
Paper #1 provides an overview of how telemedicine was implemented at a large MS care center. It details the need for thorough advance preparation prior to the visit, the need for assessing both the many emotional and psychological effects of the pandemic on persons with MS, and the unforeseen benefits of being able to evaluate the person with MS in the context of their home environment and with their family and care-providers.
Paper #2 details the disparities in access to telemedicine in different populations of persons with MS, and how these difficulties should be addressed.
Paper #3 discusses how persons with MS responded to telemedicine visits, comparing their responses to those noted after in-person office visits.
Paper #4 reviews the increasing array of electronic devices and apps that allow a whole new aspect of neurologic evaluation, namely remotely assessing neurologic function in persons with MS in the “real world”. Such data should give health care providers a much more meaningful assessment of disease activity.
Telemedicine visits will not replace face-to-face In-office evaluations. Rather they will serve as important and meaningful complements to clinic visits. Indeed, as the use of telemedicine evolves, as electronic monitoring devices and monitoring apps become more accessible and available, the care of persons with MS could reach a new level of comprehensiveness not conceivable before COVID-19.
Key Points Related to the Above Papers:
1) Paper #1: The Cleveland Clinic Mellen Center for MS Treatment is a tertiary care, multi-specialty MS facility. With the advent of the COVID-19 pandemic the clinic felt the need to greatly expand their telemedicine services. This paper describes how this was successfully implemented, but also the challenges involved in implementation.
a) The first need was to assure adequate technical access to persons with MS and to assure them of the privacy of telecommunication. Assurance was also given that such visits were not a substitute for in-person visits, and that access to their health care providers was still readily available.
b) Medical assistants next contacted individuals prior to their telemedicine visits and reviewed medications, collected self-obtained vital signs and reviewed current symptoms.
c) Advanced practice providers and/or MS fellows than initiated a telemedicine call, discussed symptom management, disease-modifying therapies, and other health issues. The information was reviewed by the individual’s attending physician who then provided summations and recommendations.
d) Since the COVID-19 pandemic greatly increased the likelihood of emotional difficulties such as depression, anxiety and loneliness, along with an increased incidence of domestic violence and alcohol abuse, the clinic routinely included a behavioral medicine evaluation in all telemedicine visits. This was felt to be extremely valuable and If substantive issues were noted, additional counseling visits were implemented.
e) Exercise and physical fitness are major adjuncts to the care of persons with MS. Via telemedicine visits physical therapy and rehabilitation providers were able to remotely assess an individual’s living environment, meet with caregivers, and provide information regarding exercise, spasticity management, and gait and transfer training.
f) Most important were patient perceptions of their telemedicine visits. A total of 1,637 persons with MS were queried. Ratings of the telemedicine visit in terms of empathy, shared decision making, and confirmation of information was the same as for in-person visits (85-100% satisfaction). There was a slightly lower response regarding recommending telemedicine visits to others, with much less satisfaction regarding ease of scheduling (as low as 57%).
g) The authors concluded that “Group telemedicine visits are a transformative option of care to enhance access, experience, and operations in MS.”
2) Paper #2: Two tertiary MS centers, the Cleveland Clinic Mellen Center for MS Treatment and the University of California, San Francisco MS and Neuroinflammation Center, compared populations of their persons with MS.
a) With onset of the pandemic utilization of telemedicine visits increased from less than 10% of visits to more than 90% of visits.
b) Persons with MS were grouped by race (white, Black, and non-Black Indigenous, People of Color[non-BIPOC]) as well as distance from the MS centers.
c) All telemedicine visits were in the persons’ homes using standard Zoom or other telemedicine programs.
d) Neurologic exams were performed, as much as feasible, during telemedicine visits and results compared to those noted during in-person visits. There were differences between the two centers in their patient populations regarding heterogeneity of race and geographic distance from the centers, but disease course and levels of disability were similar.
e) Pre-Covid teleneurology visits were mainly with younger, white individuals, living further from the centers. More BIPOC persons with MS used teleneurology post-Covid and lived closer to their MS centers. Such changes were not explained based on age or socio-economic status.
f) There are significant inequalities of healthcare to populations of BIPOC persons with MS compared to white populations. What still must be studied is why BIPOC persons with MS utilized telemedicine more for their MS care post-Covid, whether this resulted in improved outcome and satisfaction, and what issues, if any, need to be resolved to allow telemedicine to continue as a routine part of their care plan. Similar questions and issues need to resolved with the white population
2) Paper #3: This paper presents an analysis of a questionnaire sent to 613 Italian persons with MS that were asked their willingness to use telemedicine as part of their MS care plan.
a) More than half of the study participants were not familiar with the term “telemedicine” prior to receiving the questionnaire. Nevertheless, 54% of responding persons were agreeable to having telemedicine visits as part of the management of their illness. Benefits cited were saving travel time. Visual visits were preferred to audio visits, and only 2% of individuals felt such visits would be a satisfactory replacement for in-person visits. An important disadvantage was the inability to have comprehensive neurologic exams. Techniques for doing surrogate neurologic exams have been published, but as discussed in Paper #4, the real value of telemedicine evaluations may be through the use of wearable electronic devices and health-monitoring apps.
b) Disease characteristics, such as degree of disability, category of disease-modifying therapy, or duration of illness did not affect willingness to use telemedicine. Only 23% of individuals needed a caregiver to travel to their care center. However, significant disparities were noted between persons willing, and those not willing to use telemedicine.
c) Persons willing to utilize telemedicine had higher levels of education, higher levels of income, access to and ability to use electronic devices, had used electronic devices for other services than just email or social media, with 47% stating comfort with the use of electronic devices for monitoring. Living further from their care center was also an incentive favoring use of telemedicine.
d) Forty percent of responders did not have computers or tablets for internet access and only used smartphones. Of interest, age was not a factor in terms of willingness to use telemedicine, but individuals older than 70 years of age were limited in number. Of the 64 responding individuals that had used telemedicine prior to receiving the questionnaire, more than half cited technical and procedural difficulties in reaching their providers.
e) The above study emphasis that, while telemedicine is an acceptable adjunct to MS-related patient care, there are still important demographic, technical and cultural issues that need to be addressed to provide more universal access to this developing and potentially powerful adjunct to patient care.
3) Paper #4: Since telemedicine evaluations preclude a direct “hands-on” neurologic exam, this paper summarizes data from 59 articles dealing with the use of electronic devices in persons with MS, and the feasibility of using electronic monitoring to obtain “real world” data on the neurologic status of persons with MS.
a) More than 86% of persons with MS utilized electronic devices such as smartphones, tablets and computers with smartphones being the most common. However, only 18% of individuals in Germany used their electronic devices as an adjunct to their MS care. In contrast, 46.2% of smartphone users in the US used apps dealing with their MS.
b) Use was greater among less disabled individuals, younger persons with MS, those of female gender, unmarried individuals, those with several co-morbidities, and those with higher incomes.
c) Several categories of health-related apps (mHealth apps) were noted: those that consisted of self-reported questionnaires dealing with fatigue, mood, anxiety, thinking difficulties, social support, and physical symptoms, often using visual analogue rating scales, health apps that measured neurologic function such as cognitive function, composite disability assessments such as walking, hand coordination, low contrast vision and balance, and mHealth apps that dealt with adherence to disease-modifying therapy, diet management, medication management and clinic visits. The paper also summarized studies of limb-worn devices that measured limb acceleration, walking speed and walking distance and mHealth apps that taught techniques for management of fatigue and physiotherapy.
d) In general, persons with MS found the use of mHealth apps beneficial, but barriers to their use must be addressed. These include reduced vision, cognitive dysfunction, and poor limb coordination. There also are technical issues such as less access to broadband internet and inability to obtain access to larger electronic devices such as tablets or computers to allow larger font size and imaging.
e) The authors felt that, despite the many challenges to the use of electronic apps and devices, they will be of great value in providing care to persons with MS. The field is evolving rapidly and with the implementation of the federal government’s “21stCentury Cures Act” all health and insurance records must use a Standard Programming Interface that will allow the apps and devices to communicate with multiple record systems.
f) Matters of participant privacy must be addressed and most importantly, there must be full participation of persons with MS in the development of both mHealth apps and devices to assure that they address meaningful issues of importance to persons with MS and that they are maximally accessible.
While the COVID-19 pandemic has, overall, been devastating for many aspects of our lives, there have been positive aspects. The rapid development of mRNA vaccines has been a major accomplishment that will revolutionize subsequent vaccine development and production. In regard to medical care, the need to access persons with MS virtually has greatly accelerated a trend that was slowly being implemented over the past decade. While it is still too early to assess the success of telemedicine as a valuable adjunct to the care of persons with MS, the above four papers suggest an optimistic future. There are considerable challenges to making telemedicine maximally accessible to the wide spectrum of persons with MS, from the young to the elderly, to those tech-savvy and those tech-challenged, to those with major disabilities and to those with limited electronic and broadband internet access. Privacy concerns, medical licensing approvals for interstate access, and insurance reimbursement also are issues that need to be addressed. Whatever the outcome of this rapidly evolving paradigm of patient care, telemedicine is likely to become a permanent component of the care of persons with MS, with almost certain improvement in the management of this complex illness.