What are the goals of this study?
This study was conducted to learn about how people with MS are using telemedicine for different types of services, and what their experience has been like. Another goal was to learn about how people feel about telemedicine in terms of its benefits and its drawbacks. This study was done in the context of the COVID-19 pandemic, which forced many healthcare services to switch to telemedicine. The researchers surveyed people with MS before the pandemic started and again during the pandemic to compare their telemedicine use.
Who led the study and what was the funding source?
The study was led by Mitchell Wallin, MD, at the VA Medical Center-MS Center of Excellence (www.va.gov/ms) in Washington, DC, and Louise Sumner at Deloitte Consulting. The study funder is the National Multiple Sclerosis Society.
How was the study conducted?
This study surveyed people with MS about their experiences with telemedicine before and during the COVID-19 pandemic. A subset of iConquerMS members were also interviewed to learn about their experiences in more detail.
Recruitment: All iConquerMS members were invited to take part in the telemedicine survey. The first survey was sent out in January 2020 (before the pandemic) and the second survey was sent out in September 2020 (during the pandemic).
Survey design: Both surveys asked about participants' demographics (age, location, etc.), MS characteristics, use of in-person and telemedicine healthcare services, technology access, and opinions about telemedicine. The second survey also included a few new questions that were relevant to the pandemic.
Data analysis: Researchers compared the pre-pandemic results to the during-pandemic results to see how telemedicine use changed. Some participants completed both surveys, so the researchers were also able to look for any changes within the same individuals.
What did we learn from the study?
This study highlighted how the COVID-19 pandemic significantly impacted the use of telemedicine by people with MS:
- Telemedicine use surged during the pandemic. Before the pandemic, only about 25% of participants had used telemedicine in the past year. However, this number jumped to roughly 80% during the pandemic. At the same time, almost 100% of participants had had an in-person healthcare visit before the pandemic, but this declined to about 78% during the pandemic.
- The shift to telemedicine was largely driven by the pandemic. Before the pandemic, many people chose telemedicine to save travel time and to access specialists and services not available in their local area. However, during the pandemic, the primary motivator was protection from COVID-19 exposure.
- Most participants had the technology needed for telemedicine. Both before and during the pandemic, the vast majority of participants had access to smartphones, computers, tablets, and/or webcams indicating they were equipped for virtual visits.
- People with MS are generally open to using telemedicine. Even before the pandemic, a significant number of participants (84%) were open to using telemedicine for at least some of their healthcare needs. This willingness persisted during the pandemic.
- There are limitations to telemedicine. The most frequently mentioned drawback was the difficulty of getting a full medical exam remotely. This suggests that while telemedicine is a valuable tool, it cannot completely replace in-person visits.
- The type of care received via telemedicine shifted during the pandemic. While primary care was the most frequent type of healthcare received via telemedicine before the pandemic, the focus shifted to general MS care and mental health services during the pandemic.
- Insurance coverage for telemedicine improved during the pandemic. The study found an increase in the proportion of participants whose telemedicine visits were fully or partially covered by insurance during the pandemic.
- People with MS value the telemedicine experience. Most of the participants who had had a recent telemedicine visit were satisfied with it, and indicated that they would like to continue using telemedicine.
What do these study findings mean?
The findings from this study suggest that telemedicine has the potential to make a real difference in the lives of people with MS:
- Increased access to care: Telemedicine can help bridge the gap in access to specialists, especially for those who live far from MS centers or have mobility issues that make travel difficult. This is particularly important for people with MS, who often require care from a variety of specialists.
- Greater convenience and flexibility: Telemedicine offers convenience and flexibility, allowing people with MS to schedule appointments around their symptoms and avoid potentially tiring trips to the doctor's office.
- Potential cost savings: While the study found that cost was less of a concern during the pandemic due to policy changes, it could become a factor again if those policies are reversed. Telemedicine has the potential to lower healthcare costs for both patients and providers by reducing travel expenses and the need for in-person visits.
- Continued need for in-person care: Telemedicine is not meant to replace in-person care entirely. Certain aspects of MS management, like thorough neurological exams or physical therapy, may be challenging to conduct remotely. The study emphasizes the need for a balanced approach that combines telemedicine with in-person visits based on individual needs and the type of care required.
- Advocating for telemedicine access: The positive experiences reported by many participants highlight the importance of advocating for continued access to and insurance coverage for telemedicine services for people with MS.
- Improving the telemedicine experience: The study also emphasizes the need for ongoing improvements in telemedicine technology and training for providers to enhance the quality of remote care. This includes developing better ways to conduct virtual exams and addressing any privacy concerns that patients may have.
What will we do next with this information?
The National Multiple Sclerosis Society is using the results to advocate for continued and enhanced access to telemedicine for people with MS. You can learn more about their efforts:
- Testimony by an MS Activist before the U.S. House of Representatives Energy and Commerce Health Subcommittee
- Information for neurologists about the importance of offering and advocating for telemedicine in MS
Additional opportunities to improve the provision of telemedicine for MS care that were highlighted by this study include:
- Enhancing healthcare provider training: While the study found that people with MS are generally open to telemedicine, the difficulty of conducting a full neurological exam remotely was a recurring concern. This highlights the need for:
- Specialized training for healthcare providers to effectively adapt neurological exams and other aspects of MS care to the telehealth setting.
- Development of new technologies that could improve the accuracy and comprehensiveness of remote exams.
- Addressing the digital divide: While the study's participants were generally well-equipped for telemedicine, this may not be true of all people with MS. Future efforts should consider:
- Ensuring equitable access to the technology and internet connectivity needed for telemedicine, particularly for those in rural or underserved communities.
- Continuing research and data collection: This study provides a valuable snapshot of telemedicine use among people with MS, but more research is needed to fully understand its long-term impact and how to optimize its use for this population. This could involve:
- Longitudinal studies to track the effects of telemedicine on MS care outcomes, quality of life, and healthcare costs over time.
- Studies focused on specific subpopulations to determine if telemedicine is equally effective and accessible for all people with MS, regardless of disease severity, socioeconomic status, or geographic location.
Learn more:
Video: "Chat with Chat" interview with Mitchell Wallin
Journal article (open access): Use of Telemedicine Among People with Multiple Sclerosis Before and During the COVID-19 Pandemic (2023)
Some of the iConquerMS members who completed this survey also participated in a follow-up phone interview to further explore topics related to telemedicine and MS. Healthcare providers and insurers and policy experts were interviewed as well. You can read about the findings from these interviews here:
Journal article (open access): A Qualitative, Multiperspective Inquiry of Multiple Sclerosis Telemedicine in the United States (2022)
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https://www.iconquerms.org/project-MS-telemedicine-experiences