Research Projects

What were the goals of this study?

The goal of this study was to learn about the healthcare experiences of people with MS from diverse backgrounds, and incorporate those experiences into an online educational program for medical professionals.

MS was once believed to be a "White person's disease," but we now know that it affects people of all races and ethnicities. We also know that the quality of MS healthcare a person receives can vary across populations due to factors such as discrimination and lack of availability of services. 

Healthcare providers such as neurologists and MS nurses can play an important role in ensuring that all people with MS receive high-quality healthcare in their own practices and beyond. They can be more effective partners if they have a sound understanding of how MS affects people from diverse backgrounds and how bias in the healthcare system can impact health and well-being. The program created with this study was designed to deliver this information to healthcare providers in a convenient format that resonates with them.

Who led the study and what was the funding source?

The study was led by Brian Moss, CEO of Efficient CME, a company that produces medical education programs. The instructors for the program were Drs. Mitzi Williams, Annette Okai, and Stephen Krieger. EMD Serono and Janssen Pharmaceuticals, Inc. provided support in the form of educational grants.

How was the study conducted?

The study team developed a survey for iConquerMS members which incorporated input from the iConquerMS Equity, Diversity and Inclusion Committee and iConquerMS Research Committee.

The survey covered topics such as: 

• Early symptoms and the diagnosis of MS
• Decisions and discussions around taking an MS medication
• Trust in and comfort with MS healthcare providers
• Experiences with discrimination when seeking MS healthcare
• Perspectives about participating in clinical research

We sent survey invitations to iConquerMS members who had previously reported being part of a racial or ethnic minority group. Invitations were also sent to White non-Hispanic iConquerMS members as a comparison group. The MS Foundation helped with recruitment by sending invitations to people who had participated in a recent Black History Month event. The survey was open during March and April 2022. 

What did we learn from this study?

In all, 142 people participated in this study, including 94 (66%) people from a minority background and 48 (34%) who were White and non-Hispanic. The results highlighted a number of areas where MS healthcare experiences appear to differ based on participants’ background.

Early symptoms and diagnosis:

• Minority group members taking the survey tended to wait longer to receive an initial diagnosis of MS, despite often experiencing symptoms earlier.
• For instance, 35% of minority participants waited for 3 years or longer for their diagnosis compared with 25% of non-Hispanic White participants.
• Minority group members were also slightly more likely to be misdiagnosed with another condition before receiving their MS diagnosis.

Experiences with healthcare providers:

• Only 17% of minority group members said that their MS healthcare provider was of the same race or ethnicity, compared with 69% of non-Hispanic White participants.
• Approximately one out of four Black and mixed-race patients said they had changed healthcare providers due to being treated unfairly.
• Examples included:
  • Not being listened to
  • Not being taken seriously
  • Being talked down to
  • Having negative assumptions made about them
• 73% of minority group members said that their healthcare provider had never discussed how their racial/ethnic background might influence their MS.

Research participation:

• 77% of Black participants were interested in participating in an MS therapy clinical trial, along with 65% of non-Hispanic White participants, 47% of Hispanic participants, and 48% of participants from another minority race.
• Top reasons for being interested in clinical trials included: 
  • Access to new treatments
  • Helping others with MS
  • Helping others with similar racial or ethnic backgrounds (for minority group members)
• Top reasons stated by those who weren’t interested in participating in a clinical trial included:
  • Safety risks
  • Not wanting to be an experiment
  • Concerns about receiving a placebo (dummy) treatment
• Nearly all patients who participated in research, regardless of background, were satisfied with their experience.

What do these study findings mean?

Despite greater awareness that MS can affect people of all backgrounds, this survey found that minority group members had a longer path to diagnosis, despite often experiencing symptoms earlier. The results also show that most people with MS belonging to minority groups see an MS healthcare provider from a different background, and were more likely to have experienced discrimination from a healthcare provider at some point during their care. 

What will we do next with this information?

The educational program is online and available for healthcare providers to take. The study team is also planning to present the survey results at an upcoming MS medical and research conference to increase awareness of these important findings. 

We will also review these results with the iConquerMS Equity, Diversity and Inclusion Committee, and with the iConquerMS Research, Inclusion, Diversity and Equity (RIDE) Council, to discuss how iConquerMS can contribute to further awareness and progress toward MS healthcare equity.

Learn more

  Infographic: Healthcare Disparities in Multiple Sclerosis

  Video: Over-Impacted, Under-Represented: Addressing Health Disparities in Multiple Sclerosis (certified medical education program)

What are the goals of this study?

The rate of employment among working-aged adults with MS is consistently well below that of the general population. For a variety of reasons, adults with MS frequently leave employment before it is necessary, often without knowing about resources that may enable them to remain employed. The goal of the study is to learn more about the factors that influence whether a person with MS remains employed, so that personalized assistance can be provided that helps people with MS stay in the workforce. 

Who is leading the study and what is the funding source?

The study's principal investigator is Dr. Malachy Bishop of the University of Wisconsin-Madison. The study funder is the University of Wisconsin-Madison.

How will the study be conducted?

All iConquerMS members who are currently employed or who have been employed within the past 5 years are eligible to participate in this study. We are asking interested participants to answer a survey on the iConquerMS portal. The surveys ask about topics such as:

• Current employment situation
• Impact of specific MS symptoms on ability to work
• Workplace accessibility
• Disclosure of MS status in the workplace
• Perceived employer and co-worker stigma and discrimination
• Communication about and use of on-the-job accommodations
• Understanding of various employment-related resources, services and benefits

What is the study status?

The survey data is currently being analyzed by the research team. We will share the results as soon as they are available.

Share this project summary with others: 

https://www.iconquerms.org/tailoring-employment-supports-people-living-ms

What are the goals of this study?

• To learn about the effects of the COVID-19 vaccines in people with MS, including how they work and what the side effects are
• To produce information that can help guide people with MS and their healthcare providers in making decisions related to COVID-19 vaccination

Who is leading the study and what was the funding source?

The study is being conducted by the iConquerMS research team in collaboration with Dr. Farren Briggs (Case Western Reserve University) and Dr. Farrah Mateen (Massachusetts General Hospital). A steering committee that includes people with MS is guiding and overseeing the study. The project is being funded by the National MS Society and Quest Diagnostics.

How is the study being conducted?

All iConquerMS members are eligible and welcome to participate. Currently there are over 1,500 participants. We ask participants to answer a few surveys on the iConquerMS portal at different timepoints asking about:

• Details of the vaccine that was received (e.g., date received and vaccine manufacturer)
• Short-term reactions to the vaccine (e.g., arm soreness)
• MS symptoms (type of symptom and severity) before and after receiving the vaccine
• COVID-19 infection (for anyone who becomes infected with COVID-19 after vaccination)
• Demographics (e.g., date of birth, race, ethnicity)
• MS characteristics (e.g., type of MS, MS therapies)

We are also inviting some COVER-MS participants to provide blood samples for a substudy. This substudy will analyze the immune responses (antibodies and T-cell activity) to the vaccines to learn how these responses are affected by MS drugs and other factors.

What are we learning from this study?

Our initial study findings have to do with reactions (side effects) to the vaccines. We have learned that:

• The frequency of vaccination reactions reported in COVER-MS was very similar to that reported in the COVID-19 vaccine clinical trials

• Pain was the most commonly reported reaction, followed by fatigue and headache

• Reactions were more common in younger people, women, those with a prior COVID-19 infection, and those who had a reaction after the first shot

• Reactions were not affected by being on an MS drug, or type of MS, or how long someone has had MS

What do these study findings mean?

People with MS should not be concerned about having more serious reactions to the COVID-19 vaccinations compared to the general population.

What will we do next with this information?

The results of the study have been published in a variety of formats (see below) and have been shared with the National MS Society to inform their COVID-19 vaccination guidance for people with MS.

Learn more

  Video: "Chat with Chat" interview with Dr. Farren Briggs

  Infographic: COVER-MS Findings - COVID-19 Vaccine Reactions

  Journal article (open-access): COVID-19 Vaccination Reactogenicity in Persons With Multiple Sclerosis

  Data: COVER-MS Data Dashboard

Share this project summary with others:

https://www.iconquerms.org/safety-and-effectiveness-covid-19-vaccines-people-ms

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)

Share this project summary with others:

https://www.iconquerms.org/project-MS-telemedicine-experiences