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

Perspectives About Time Frames in Stem Cell Research for Multiple Sclerosis

Mississippi is one of the poorest states in the United States, with multiple lagging health indicators. Multiple sclerosis (MS) outcomes can be impacted by social determinants of health (SDOH). Research in locations with high gradients in the SDOH is especially important.

 In 2023, 2 focus groups of adults living with MS in the Jackson, Mississippi, metro area were conducted online, hosted by the University of Mississippi Medical Center.  Participants completed a survey about the US government’s Healthy People 2030 SDOH list prior to the groups. The focus groups’ transcripts were analyzed using a thematic inductive approach.

The 11 participants reported a median of 6 SDOH per person. Participants were mostly female (91%), Black (64%), older (average age 57 years). Most had relapsing MS (82%) with an average disease duration of 17 years. All were educated (100% with a bachelor’s degree or above). Participants scored high (> 50% respondents were affirmative) on a history of incarceration (personal or family member), perceived treatment with “less respect in a medical setting,” and access to MS medications without prohibitive cost. There was job loss (36%) and housing insecurity (36%). Eight SDOH were identified as salient: education; work and occupation; neighborhood and environment; transportation and disability services; water and food; crime, violence, and public safety; social isolation and integration; and race. The time of MS diagnosis was considered the most important period related to SDOH. Additional concerns included access to MS research.

The lived experiences of people with MS in Jackson, Mississippi, are reported as foundational work to disaggregate and redress the many SDOH that were considered relevant by people living with MS.

From the Department of Neurology, Massachusetts General Hospital, Boston, MA (FJM, JBH); Harvard Medical School, Boston, MA (FJM); The Ken & Ruth Davee Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL (FJM, JBH); Department of Neurology, University of Mississippi Medical Center, Jackson, MS (VA, MAW). 

: Farrah Mateen, MD, PhD, The Ken & Ruth Davee Department of Neurology, Northwestern Medicine, Morton Building 7-643, 310 E Superior St, Chicago, IL 60611; 

Farrah J. Mateen, MD, PhD, reports research funding to her institution from Amgen, Bristol Myers Squibb, EMD Serono, Genentech, Novartis, and TG Therapeutics and consulting fees from Amgen, Genentech, Novartis, and Roche. Mary A. Willis, MD, reports involvement in research sponsored by Bristol Myers Squib and Novartis with funding to her institution and consulting or speaker fees from Alexion, Biogen, and EMD Serono. The other authors report no relevant disclosures.

This research was funded by an investigator-initiated grant from Genentech. The study sponsor had no role in the design, conduct, writing, or decision to publish the results of this work.

There are multiple social determinants of health (SDOH) that may influence the experience of people with multiple sclerosis (MS), but these have been largely understudied.

 This is particularly true in populations that experience the highest number of SDOH. Mississippi is a southeastern US state with a population of 2.94 million people.

 The state ranks last or close to last in the US in terms of major disease and critical health outcomes.

 In 2023, 18.0% of Mississippi’s residents lived in poverty, 10.3% were without health coverage, 17.7% were disabled, 54.3% were employed, 0.2% of adults used public transit to go to work, and 25.5% held a bachelor’s degree or higher.

 Mississippi’s population is 58.7% White, 37.8% Black or African American, and 3.6% Hispanic.

 Life expectancy in Mississippi was recorded as the lowest in the country at 70.9 years, compared with the national average of 76.4 years in 2021.

Jackson, the state’s capital and most populous city, exemplifies these challenges. The greater Jackson metropolitan area was home to 610,257 residents in 2023, accounting for approximately one-fifth of the state’s population.

 The city of Jackson has experienced a series of major drinking water system failures, including loss of water pressure and unsafe water warnings in 2021 and 2022, which led to federally declared emergencies and long-term intervention by the US Environmental Protection Agency.

The situation for people with MS is likely shaped by these broader SDOH and by a shortage of MS subspecialists in the Jackson area.

 In other studies, adverse SDOH (eg, lower income, underinsurance, and neighborhood deprivation) are recognized to disproportionately impact Black, Hispanic, and Latinx individuals with MS, leading to delayed care and worse MS outcomes.

 There is a lack of qualitative research examining how SDOH are experienced by people with MS in Mississippi, one of the poorest US states, and more importantly, how these SDOH may intersect and be modified.

To address this gap, 2 focus groups of adults with MS living in the Jackson metropolitan area were convened by neurologists. Our aims were to catalog the SDOH perceived as most influential by people living with MS, identify when in the disease course those SDOH were most acutely felt, and generate
patient-informed hypotheses for future interventions and study. In doing so, we sought to understand the realities of people with MS in an environment with a high potential for SDOH burden using their own words.

The study was approved by the University of Mississippi Medical Center (UMMC) Ethics Board and exempted from the institutional review board of the Mass General Brigham (MGB).

Inclusion criteria for participants were adults with a neurologist-confirmed diagnosis of MS, current residents of Mississippi, and willingness to discuss their SDOH. Many participants were seen at the UMMC and had their medical records reviewed for MS diagnosis confirmation by a study physician at the UMMC (V.A., M.A.W.). Those who were not seen at the UMMC had the diagnostic confirmation of MS by a study physician (V.A.). To enroll in the study, it was not required that the MS participant be actively seeing a neurologist.

Recruitment was via e-mail; word of mouth through National Multiple Sclerosis Society (NMSS) peer support groups in Jackson, Mississippi; and direct referrals from a local MS neurologist at the UMMC (M.A.W.). Email messages were sent to NMSS chapter leaders, who forwarded the message to their members. There were no formal presentations of the study or publicly posted advertisements. Interested people with MS were encouraged to leave their name with a study physician for future callback and/or sign up via an online participant-facing portal (https://rally.partners.org) for study recruitment, which was run by the Massachusetts General Hospital (MGH). Sampling was consecutive on a first-come, first-served basis.

Participants completed written informed consent remotely via Adobe—forms were emailed, reviewed by phone, signed in REDCap, and stored on a secure UMMC server. The survey

 was previously used for MS and SDOH focus groups conducted in Massachusetts by the primary author (F.J.M.) and refined for use by Mississippian participants by our team. Participants received the electronic questionnaire, querying their SDOH, as detailed by the Healthy People 2030 initiative,

 as well as their clinical MS history. All SDOH and clinical variables were patient reported.

Two focus groups were conducted online in August 2023 by UMMC and MGB neurologists via Zoom video software; they lasted approximately 2.5 hours each. Thirteen people with MS agreed to participate, and 11 participated (group 1, n = 6; group 2, n = 5). The 2 participants who did not come were not reachable to provide an explanation.

The 2 groups were offered on different dates to accommodate different schedules. The time of 4:00 pm was chosen after asking participants for availability preferences on both dates. This was to avoid missing too much work or delaying commutes home too long. If a participant could not attend the first group and still expressed interest in participating, they were invited to the second group. The participants were not deliberately divided. There was an overall balance between the 2 groups in terms of SDOH and overall participant numbers. Participants were invited to attend the focus groups online via Zoom or in person at the UMMC, where a study physician was present. Although parking reimbursement and refreshments were offered, no one chose to come in person, citing the summertime heat or the burden of transportation. Participants were paid $160 (US dollars) for their time.

Farrah Mateen (from MGH) is a neurologist with a PhD in public health and has conducted similar focus groups in MS and SDOH in Massachusetts.

 She led both study sessions with comoderator neurology resident Violet Awori (UMMC) using a semistructured discussion guide covering the US Department of Health and Human Services Healthy People 2030 SDOH domains.

 The MGH team organized logistics, facilitated questions, and provided compensation for participants.

The concept of SDOH in general was briefly discussed, after asking the group if they were familiar with the concept and if they found it relevant to their MS. Prompt questions in both focus groups were as follows: (1) What are the SDOH that are relevant to your MS? (2) How do these SDOH affect you? and (3) What would you like to see in your community to address these SDOH? If the discussion diverted from SDOH, the topic was probed for relevance, and if unrelated, the discussion was prompted by one of the SDOH variables on the Healthy People 2030 list.

Audio recordings and contemporaneous handwritten notes by the moderators captured all dialogue. Participants were encouraged to share freely and clarify one another’s comments.

Handwritten notes and transcripts were analyzed via an inductive thematic approach, in which codes and themes are derived directly from participants’ language rather than devised at the outset of the study design.

 Authors Mateen and Awori independently coded for SDOH relevance, compared interpretations, and reconciled discrepancies to compile comprehensive themes. Theme salience reflected both frequency of mention and apparent consensus among participants. No natural language processing or other software was used. Reporting follows the Consolidated Criteria for Reporting Qualitative Research 32-item checklist

There were 11 participants; 9 (82%) had relapsing-remitting MS. Participants had a median of 6 (mean, 5) SDOH and were generally older (average age 57 years old) with an average MS disease duration of 17 years. Medication access was high, with 9 (82%) on a disease-modifying therapy (DMT). The group all had a bachelor’s degree or more education, was predominantly female (10 [92%] participants), and was mostly Black (64%) (

). Participants scored high on having a history of personal or family member incarceration and perception of being treated with “less respect in a medical setting.” Job loss was reported by 36%. Housing insecurity was reported by 36%. Public health insurance was reported by 36%. Detailed participant responses related to the SDOH are presented in Table 1.

Participants recognized the effects of SDOH across the MS disease course but reported they were most relevant to the time of receiving an MS diagnosis. Additional relevance was noted in the contexts of access to ongoing neurologist’s care, access to a DMT, and access to MS research. Specific epochs in the MS experience and direct quotations related to MS diagnosis, ongoing care, and access to MS research are provided in 

All SDOH of relevance to participants, as ordered by the Healthy People initiative, were health care access and quality, education access and quality, social and community context, economic stability, and neighborhood and built environment. Within these, participants emphasized themes of race, education, occupation, transportation, disability services, crime and violence, water and food access, quality housing, and social isolation. Issues of lower salience were gender, income, ethnicity, and religious beliefs.

Six participants believed that race was relevant to a delay in diagnosis and, at times, a misdiagnosis of MS. This mostly applied to Black participants. One said, “I was told, ‘It’s going to be a while to get you in.’ Me being a woman. Me being a Black had something to do with it.” Another added, “I had to make myself look bigger and stronger and louder to get what I need[ed].” Several participants expanded their experiences to their perceptions of Black individuals in the health care setting in general. “How many other Black people are told they are faking instead of sending them to a doctor who can figure it out?” They also emphasized historical injustices in the US, including, “As the Black community, we have been taught for years to keep our mouths shut” and “We were told for years to keep our mouths closed…taught not to tell our business.” Awareness in the African American/Black community was thought to be in need of strengthening overall, as stated by 2 participants: “I think a lot of African Americans don’t know about MS. I don’t think they realize the inflictions” and “I think people should be more informed in the Black community about MS. Before I had it, I didn’t know anything about it.”

Three participants remarked that their educational levels were beyond a bachelor’s degree and helped them understand the MS diagnosis and treatment options; several felt the lack of high-quality schools in the state made them prone to vaccine-preventable diseases and fewer helpful health policies related to disability. One participant reported the need for more intervention in society, given the educational system in Mississippi: “The more disadvantaged you are, the better your education system should be. It inoculates us against fibs, misinformation, and BS.”

In Jackson, water security has been challenging. This was believed to pose a safety risk to MS patients on DMTs, due to water-borne infectious risk while being immunosuppressed, and also led to chronic stress, uncertainty, and negative mental health impacts. Four participants commented on the water quality. (1) “Continued water issues that we’ve had…. This affected whether or not we would have stress.” (2) “I go without water.” (3) “Water was out for about 3 weeks. I had a filter for my sink, on my shower also.” (4) “The water is bad. I just buy water.” Another participant linked her MS to the water supply: “How can you tell if you already have a condition if the water is making it worse?”

Three participants reported an unmet need to access fresh foods. One participant said, “It’s kind of hard to get organic food without paying an arm and a leg. And then, it doesn’t last long. It’s hard to find things you need.” As a solution, another participant proposed, “Funds [are needed] to pay for gardens in the community.”

MS had variable impacts on employment, with some participants retiring from their jobs for reasons unrelated to MS, some leaving a job due to MS and risk of opportunistic infections while on a DMT, some staying in a job to maintain insurance coverage for a DMT, some leaving due to decreased mobility and increased fatigue, some reducing their job demands to avoid job termination, and 3 never disclosing their MS diagnosis to their employers for fear of job termination. The heterogeneity of responses was notable on this SDOH, although most responses were negative. Two participants said, “MS lacks a lot of jobs I can perform and not lose my financial stability” and “If my employer finds out I need an assistive device, I will not be returning to work.” Others focused on the relationship between employment and health insurance: “My medication would not be covered without me working” and “DMTs have always been tied to your job. I have been without medication as a result. State insurance denied coverage of my medication. I got a flare.” Two participants left their jobs specifically because of MS. One said, “I lost my health insurance. I lost every friend I had over 20 years.” Another stated, “I had to leave my first career. There were ‘superbugs’ in the children’s hospital. It got to be too much.” One participant decided not to disclose her MS diagnosis to her employer, which resulted in no work accommodations: “I have not revealed I have MS to [my employer]. I took a lower position and shorter hours…to go to appointments and remove risks of being fired.” An outlying positive response was, “My first boss also had MS and helped me a lot.” Four participants wanted to work, but felt they could not. One said, “I would rather return to work. [We need] ways we can help companies understand how to keep people with MS employed.” Another said, “We need to advocate for organizations employing people with MS, working instead of forcing them to retire.”

Participants reported that public transportation options were severely limited and did not cover the needs of people living in more rural areas. One woman said, “I cannot drive because of my MS. [This] exacerbates the social isolation and lack of access to everything: fresh food, recreation, social opportunities.” Another shared, “I would be everywhere if I didn’t have MS.”

Both focus groups reported that sidewalks are only sometimes present in Jackson. One participant reported having to engage in several years of litigation to obtain improved disability services in Jackson. He said, “I have been fussing and fighting for everything. I literally had to sue them in federal court…. Outside of Jackson, it didn’t catch on.” There were transportation limitations at one participant’s employer: “There was 1 elevator [at work]. I had to find the janitor to get the key…the stress of it.”

Three participants reported traveling out of state to get MS care (to Minnesota, Texas, and Florida). One participant noted, “I have a 6.5-hour drive [to get] Lemtrada.” Another said, “I spent a lot of money traveling back and forth” before discontinuing the DMT that required her to travel.

Several participants reported a fear of gun violence and random violence, including robberies, vandalism, and assaults when at home, accessing medical care, and doing daily activities such as exercising or grocery shopping. There were multiple salient quotations from participants, and there was overall concordance on this determinant. (1) “I never carry a purse.” (2) “I keep my bus card and money and keys in different pockets.” (3) “I stay in the house.” (4) “I don’t go to the grocery store or go out after 5. I don’t go out or take a risk.” Specifically related to MS disability, participants said, (1) “Certain things I don’t, can’t, or don’t want to do anymore. I don’t go places because I can’t run anymore. I am in trouble because I fall.” (2) “MS has made a big difference in when I go out.” (3) “I am always looking around to see if someone is going to take advantage of me…. I watch where I go because I am slow.” One participant characterized crime as targeted at “people who are already vulnerable, who are sick, and too sick to fight them.”

Fear of crime and violence specifically affected access to neurological and general medical care: “[Can you] go safely to your doctor’s appointments? My coworkers have [had their] cars vandalized day or night, broken into, purses ripped off of them.” Another participant reported that if an appointment runs late, there are problems for her, “[At] 4:30, 5:00 pm, access [to the hospital parking lot] is cut off. They close the exits because of violence.”

People with MS also had general exposure to crime and violence. One woman reported, “My house was ransacked. They stole everything.” Another said, “I’ve been in my house 4 years. Someone got murdered across the street, another one. The kids are so disrespectful.” A third participant reported, “I’m waiting for the day to move…. The stress of it sometimes. It might be a gunshot in a panic. That can affect you. You wake up and hit the floor.” This was connected to “overall stress. Chronic stress does affect MS.” Violence also affected recreational and social gathering opportunities: “Holidays are just as bad. I found bullets in my yard.”

Affordable housing options near grocery stores and public transport were considered very limited. One said, “We need more compact communities: sidewalks, buses, trains.” Another said, “I live in the country with no sidewalks.” A third reported, “I could have so much more freedom in Boston, more independence, and [I could] go and do more things, but I can never afford it.” A recurring theme among participants was summarized as “can’t get out of Jackson.” Specific to MS clinics, one woman shared a widely agreed-upon comment: “It’s more rural in Mississippi, so harder to get care.”

Most participants reside in flood-prone or climate-insecure areas. One reported, “I found a house, but it is in a flood zone. Is this the time when I am going to lose everything?” Several questioned environmental exposures in agricultural regions related to the onset of MS, such as growing up in cotton fields with pesticides. Said one, “I grew up in the Mississippi Delta, a low-income area.” Another relayed, “I think I have had several exposures that played into my disease. I also worked in the cotton fields for a summer and got sprayed.”

Participants stated they are seen as physically slower, easily tired, and at risk of falls, making social integration less likely. Some reported feeling shunned from social events such as football games and family gatherings or stigmatized in public settings, such as church services, due to their fatigue and need for frequent breaks and assistance. One woman stated, “I fell in the middle of a Christmas parade. People stopped inviting me to different things.” Another said, “I lost all of my friends when I got sick, every one of them.” A third shared, “I was told, ‘We didn’t invite you to the cookout because we thought you would be tired.’”

The presence of MS community groups was considered beneficial. One participant claimed, “We are all friends [in the Central Mississippi MS support group]…. It helps to have a community of people that you can relate to.” Others emphasized close connections that were positive: “My friends understand. My kids understand,” and “My husband is really good at helping me.” Although religious groups were not prominently reported in these focus groups, one woman shared a positive impact: “When [I] got too hot in church, the pastor made me feel comfortable.”

Multiple solutions were suggested by participants at the micro and macro levels of society. Participants suggested more education for their communities, physicians, and families, not just about MS, but also about disability. They noted that their diagnoses were made by people who were not neurologists, including a dentist, an occupational therapist, and friends. They found online resources helpful to combat a lack of access to early in-person expertise. Telemedicine across state lines was considered to be a viable solution but, at times, could feel isolating. From an employment perspective, participants proposed better job opportunities for people with MS, so they could remain financially stable as their disease evolved. Ideally, they suggested denser city structures to access food and clean water and maintain social lives. Public transportation and better accessibility for people with MS would be helpful to most participants. Many were loyal to their city and communities but desired better, broader educational systems as well. They believed they could contribute to research on DMTs and help answer epidemiological and etiological questions about what causes MS.

Although limited in overall number, our participants with MS living in the Jackson metropolitan area of Mississippi identified multiple SDOH that are relevant to people with MS. The median number of SDOH per participant was high overall. These SDOH are contextualized by determinant to provide the lived experiences and voices of people with MS in a very geographically poor area in the US. Nonetheless, our participants were heterogeneous in the number of SDOH, including variations in income, sense of community, work, and access to MS care.

SDOH that are commonly recognized in Mississippi, such as limited public transit, intermittent water contamination, exposure to crime and violence, and rural residents’ isolation, were also noted among people with MS. At times, SDOH limited access to early MS diagnosis, specialty care, and MS research. The intersection of 

 from MS with society was highlighted in terms of work and employment limitations, risk of exposure to violence, and limited access to fresh food. The intersection with 

 was prominent in terms of chronic stressors that occur with lower access to safe, affordable housing, communities, clean water, social support, and feeling believed. Higher educational achievement was thought to provide an advantage to people with MS, as it enabled them to learn about MS via independent research, separate from available health systems access. These findings align with a previous scoping review that identified themes across access to care and information, as well as practical barriers like financial strain, as recurrent themes among people with MS.

Participant responses suggest that SDOH are not experienced as isolating barriers, but rather as mutually reinforcing pressures—compounding and shifting across the disease course in ways that shape not only access to MS care, but also one’s sense of agency and belonging in the health care system.

As of 2024, 1.11 million people in Mississippi—37.8% of the population—identify as Black/African American, a population that is recognized to have more SDOH and to be historically disadvantaged in the US.

 The impact of race as it may relate to all other SDOH deserves special mention, as Black participants with MS disproportionately reported a lack of community awareness of MS, disbelief of neurological symptoms that led to delayed diagnosis, and a general sense of not being taken as seriously by people in the medical system. A recent US focus group study concurs, finding that Black adults with MS have disparate care experiences compared with their White counterparts, more frequently citing barriers to affordable and accessible care, as well as racial discrimination.

 Similarly, a retrospective cohort study of 500 individuals with MS treated at a comprehensive center in Birmingham, Alabama—a setting that also reflects structural and regional challenges in the US South—found that Black patients had significantly higher odds of severe disability and requiring ambulatory assistance compared to their White counterparts, even after adjusting for demographic, clinical, and socioeconomic covariates.

Together, these findings imply that in regions with high SDOH burden, race may further determine health care experiences and health outcomes, and they operate in more than 1 direction: as both an SDOH and as a compounding factor of other determinants.

One limitation of our study is a lack of objective disability metrics, which precluded correlating SDOH themes with disease severity. Additional limitations include our small sample size and overrepresentation of participants with higher education and higher income. People living with MS who are extremely underserved (eg, undiagnosed, outside of medical care) would represent a different group of patients than we have surveyed here. Our findings may not be generalizable to all people with MS in Mississippi, as many may be seen by clinicians who are not neurologists, be unaware of their diagnosis, be unable to access the internet, or elect not to participate in academic research. We provided payment for participation; however, some people may not have been able to leave work by late afternoon, when the groups were held. The choice of time of the focus groups was based on participants’ consensus. We may have missed specific eligible participants due to low literacy or mistrust of medical research. We had no Hispanic participants and did not recruit for the study with Spanish advertisements or to Spanish-speaking groups. This lack of participation may be expected given the low number of Hispanic residents in Mississippi (3.6%) and the small sample size of our study. We are unable to comment specifically on non-English speakers in the Jackson area in Mississippi.

Finally, the number of MS specialists in Mississippi is as low as is found in many lower-income countries and is not stable.

Our efforts to identify more patients with MS were precluded by the out-migration of physicians from the state. Mississippi is an “MS specialist desert.”

 The number of MS specialists needed in any geography is not well defined, and the need is likely higher where there are more participants with many SDOH.

Our study results are meant to be formative for future studies on MS and SDOH. Given the scant literature on MS from Mississippi over recent decades and the risks of SDOH for people living with MS, we provide insights and patient perspectives on potentially modifiable nonmedical factors that could change a person’s MS disease experience.

To reach a wider group of people living with MS for future similar studies, primary care offices could be engaged. Additionally, meeting people in the community through advertisements on public transit (eg, buses), barber shops and salons, churches and other places of worship, grocery stores, casinos, pharmacies, recreation centers, and community kitchens could be considered. Successful recruitment and educational initiatives have been done in related diseases. For example, the Arkansas Minority Barber and Beauty Shop Health Initiative engaged more than 1800 people for cardiovascular disease screening in 14 counties over 3 years.

 Programs for cardiovascular disease screening and education have been successful in churches in Alabama.

 Some companies, such as Walmart, are developing services to advertise clinical research opportunities to underrepresented populations, particularly through their pharmaceutical care operations.

Future work may combine qualitative inquiry with quantitative SDOH indices and disability scales. Given our findings, interventions such as patient-navigation programs, transportation vouchers, and expanding teleneurology access may address some but not all of the SDOH reported in areas like Mississippi.

Social Determinants of Health in Multiple Sclerosis in Jackson, Mississippi: Focus Groups

The perception that one is at increased risk of interpersonal victimization or violence can deleteriously affect community participation and quality of life. Race, sex, and disability status, often associated with use of an assistive mobility device (AD), are known correlates of perceived risk of victimization; however, almost no research has explored how these variables intersect for individuals with multiple sclerosis (MS), and none have sought to identify potential risk and protective factors.

Data for the present study come from a single time point derived from a 10-year longitudinal survey of 446 individuals with MS. Lifetime trauma exposure, personal resilience and self-efficacy, control over participation, and perceived risk of interpersonal victimization due to disability were all assessed via self-report. Statistical analyses included analysis of covariance with participants stratified by race/ethnicity, sex, and AD use.

After controlling for lifetime trauma exposure and severity of physical impairment, the use of an AD was significantly associated with greater perceived risk of victimization due to disability. Further, people with MS from racial and ethnic minority groups who used ADs had the highest perceived risk relative to all other groups. Higher levels of perceived risk were associated with a lower sense of control over community participation, lower resilience, and lower disease management self-efficacy.

Visible indicators of disability may contribute to perceptions of vulnerability, especially among people with MS who are racially and ethnically marginalized. Clinicians should be aware of how perceived vulnerability may impact a sense of control over community participation, particularly when educating patients on AD use.

From the Department of Social Work, Louisiana State University, Baton Rouge, LA (LAM); and the Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA (DR, AF, IM). 

 Leah A. Munroe, MSW, Huey P. Long Field House, APT 311, Baton Rouge, LA 80802; 

 The contents of this publication were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR; grant number H133B080024). NIDILRR is a center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this publication do not necessarily represent the policy of NIDILRR, ACL, or HHS, and no endorsement by the federal government should be assumed.

 The authors report no conflicts of interest.

Living with a cognitive or physical disability can affect a person's sense of personal safety, contributing to an increased fear of interpersonal victimization (eg, physical/sexual assault, theft, etc).

 Increased perception of crime can follow in the wake of personal victimization, witnessing a crime, or even hearing about a crime in the community.

 Fear of victimization may also be related to age and sex, with some previous research suggesting that women, older adults, and young adults fear interpersonal victimization at higher rates than men and middle-aged adults.

 While men are generally more likely to be the target of crimes than women, women with disability are more likely to be targeted than men with disability.

 Fear of victimization can lead to restrictions in community participation, as individuals may (for example) avoid strangers, restrict social activities, or avoid activities at night. These behaviors can lead to social isolation and poorer quality of life.

In addition to personal demographic factors, visual indicators of disability, such as the use of an assistive mobility device (AD), may also contribute to a sense of vulnerability. One qualitative study of people with disabilities in Ireland noted that using an AD can be a double-edged sword,

 such that while utilization of ADs can increase one's feelings of safety in some situations, in other instances, ADs may draw attention to one's disability and may make them a target for interpersonal crime.

The current literature on disability and perceived risk of victimization has several conceptual and methodological problems. First, most studies do not differentiate between a 

 perception of increased risk due to one's disability. Second, some research suggests that being a woman or belonging to a racial or ethnic minority group influences a person's fear of victimization,

 but very few studies take an intersectional approach, examining how gender and race interact to influence perceived risk of victimization.

 Third, few studies have examined perceived risk of victimization in a sample of adults with a chronic and progressive health condition, such as multiple sclerosis (MS). Finally, research has yet to investigate risk or protective factors linked to perceived risk, nor has it adequately addressed potential confounding variables, such as lifetime trauma exposure, when examining perceptions of vulnerability.

These factors are paramount in MS, where a progressive loss of neurologic function and increased use of ADs is common. This analysis examines fear of interpersonal victimization due to disability among a large sample of adults with MS. We examine how race, age, sex, and use of a visible AD for mobility relate to fear of interpersonal victimization. We identify potential protective factors and examine how perceived vulnerability is related to community participation outcomes.

This study used data from a national, longitudinal survey funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. This survey tracked mental and physical health in 1855 individuals with spinal cord injury, MS, muscular dystrophy, or postpolio syndrome and included 7 assessment time points from 2010 to 2018. Final surveys were completed and returned by 446 participants with MS (91.6% of 487 originally sent). Data for the present analysis were limited to this final time point, where measures relevant to trauma and perceived vulnerability were collected. All surveys for this time point were mailed between October 2016 and May 2017.

Participants were recruited from a research participant registry at the University of Washington (UW), advertisements in MS organization newsletters and websites, word of mouth, and the UW MS clinic. Inclusion criteria included self-report of physician-confirmed MS diagnosis, 18 years of age or older, and English language literacy. Participants completed consent documents and returned them with completed surveys. Each returned survey was examined by research staff for completeness; if missing data were identified, staff attempted to contact the participant and obtain the missing data via letters and phone calls. Participants were reimbursed $25 for completing each survey. All study procedures were approved by UW's Human Subjects Division.

Demographic variables, including age, race/ethnicity, years since diagnosis, education and income level, zip code, and sex, were included for descriptive purposes. Due to the relatively small number of respondents belonging to a racial minority, compared to White, this measure was collapsed into binary categories, White and racial minority. Individuals who identified as belonging to the racial or ethnic groups of Black, Asian/Pacific Islander, Hispanic/Chicano, Native American/Alaska Native, or other were categorized as racial minority. We chose the terminology 

 per the Centers for Disease Control and Prevention's recommendations of preferred language.

 Lifetime traumatic exposure was measured using the Life Events Checklist (LEC5) from the 

Diagnostic and Statistical Manual of Mental Disorders

, fifth edition. The LEC5 is a 17-item measure based on the original Life Events Checklist developed by the National Center for PTSD and was initially designed to assist a clinician in diagnosing posttraumatic stress disorder (PTSD).

 The LEC5 asks respondents about lifetime (ie, childhood, adolescent and/or adult) exposure to stressful or traumatic events, including natural disasters, serious transportation accidents, physical and sexual assault, and combat exposure.

 Respondents are asked to indicate 1 of 3 levels of exposure to each event (

). The LEC5 demonstrates convergent validity with other measures that assess trauma exposure and is associated with PTSD severity.

 A total count of personally affecting events (ie, events that 

) is commonly used in PTSD research and demonstrates adequate reliability

No validated measure of perceived risk of victimization due to disability could be identified for this study; therefore, this study created a 3-item scale based on the original wording of 3 LEC5 interpersonal victimization items. Participants were asked, “Because of your disability, how much more at risk do you feel for: (1) Physical assault (for example, being attacked, hit, slapped, kicked or beaten up); (2) being the victim of robbery or theft; and (3) sexual assault (rape, attempted rape, made to perform any type of sexual act through force or threat of harm)?” Responses on a 5-point scale were 

somewhat more risk, quite a bit more risk

. A total score was created by summing these 3 items, such that the total possible score ranged from 3 to 15. Cronbach a for this measure was 0.93, suggesting a strong internal consistency. For clarity, this in-house measure is referred to as the Perceived Risk of Victimization due to Disability (PRoV-D) scale.

Severity of physical disability or impairment was measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function With Mobility Aid (version 1) short form. This 11-item measure assesses the ability to engage in activities of daily living (eg, bathing, eating, and toileting) and physical ability (eg, ability to reach an overhead object, open a heavy door, and stand upright briefly without support). Response choices are on a 5-item scale, ranging from 

. This measure demonstrates strong psychometric properties in samples of people with medical conditions, including MS.

 The total score collected from the PROMIS Physical Function Scale was later normalized to a 

 score based on a large national comparison sample for analysis.

Choice and control over participation was assessed using the 13-item Control Over Participation Subscale, taken from the Enfranchisement Scale.

 The Control Over Participation subscale reflects the extent to which one perceives a degree of control over and choice in participation and contains items such as, “I am able to go out and have fun,” “I have control over how I spend my time,” and “I participate in activities that I choose.” Response choices range across a 5-point scale from 

. Raw scores were transformed to a normalized 

 score for analysis. Psychometric properties, including internal consistency and sensitivity to change in people with disabilities, have been previously described.

Use of an AD for mobility was measured by a single item asking participants, “Do you use any equipment or devices to help you move around?” If answered in the affirmative, participants were asked to name the specific AD and frequency of use. This question was dichotomized as yes/no for the present analysis.

Disease-management self-efficacy was measured using the University of Washington Self-Efficacy Scale. This 6-item scale asks participants to describe their confidence in managing their health condition. Two of the items are “How confident are you that you can keep your health condition or disability from interfering with your ability to interact socially?” and “How confident are you that you can figure out effective solutions to issues that come up related to your health condition or disability?” Items are scored on a 5-point scale ranging from 

 score metric. This scale has demonstrated strong psychometric properties in people with disabilities.

Resilience was measured using a custom short form derived from the 28-item University of Washington Resilience Scale (UW RS).

 This short-form UW RS was developed and validated in people with disabilities, including MS, and conceptualizes resilience as the capacity to bounce back from and/or maintain function in the face of adversity. The UW RS and sample short forms demonstrate strong psychometric properties in both the general population and in people with chronic health conditions. UW RS was derived via a formal process utilizing item response theory, allowing for the creation of custom short forms by selecting different items and different numbers of items from the bank.

 In the present study, participants were offered 10 statements from the item bank with responses scored from 1, not at all, to 5, very much. The statements included, “I maintain a positive outlook even in bad circumstances” and “When something stressful happens, I keep going.” Total scores were transformed to a 

This study had 4 overall aims: (1) describe the overall rates of lifetime trauma exposure and of the perceived risk of victimization due to disability in this sample of people with MS; (2) evaluate the differences in perceptions of perceived risk among subgroups of people with MS, stratifying the sample by race/ethnicity, by use of a visible AD, and by sex; (3) describe the potential protective factors associated with lower perceived risk; (4) characterize the potentially negative impact of perceived risk on control over participation.

We initially hypothesized that women with MS who used visible ADs and who were in a racial or ethnic minority group would report the highest level of risk for being a target of crime due to their disability. We further hypothesized that this heightened perception of risk would be negatively associated with control over participation. Finally, we hypothesized that personal protective factors like resilience and self-efficacy would be associated with less perceived risk of victimization due to disability.

To evaluate these hypotheses, we utilized approaches within the general linear model, including linear regression and analysis of covariance (ANCOVA), adjusting for control variables. Race (White vs racial minority), AD use (yes vs no), and sex (men vs women) were dichotomized for analyses. In all analyses, we controlled for lifetime personal trauma exposure and severity of physical impairment, as these would be expected to influence the perceived risk of the likelihood of victimization.

After removing cases with missing values for the study variables, the final sample consisted of 442 participants. 

 presents the demographic and diagnostic variables of the cohort. Participants were predominantly White (91.9%), and mostly women (82.6%), and had relatively high education levels (58.2% completed college, and 24.7% completed postcollegiate education). Participants ranged in age from 28 to 86 years (M age = 62, SD = 9.8). They reported an average of 22.0 (SD = 9.3) years since being diagnosed with MS. More than 60% of participants used ADs. 

 presents the means and standard deviations for key study variables.

Rates of lifetime exposure to traumatic events are shown in 

. On average, participants reported a personal lifetime history of 1.7 traumatic events (SD = 2.1). They also reported 

 an additional 3.1 (SD = 3.7) events as happening to a close family member or friend. The most frequently reported events that 

 were transportation or car accidents (29.4%) and natural disasters (24.4%). A minority of participants reported a personal history of interpersonal violence marked by either unwanted/uncomfortable sexual experience (14.7%), physical assault (12.2%), sexual assault (10.4%), or assault with a weapon (4.8%).

The mean score on the PRoV-D measure was 5.5 (SD = 3.2) and ranged from 3 to 15. Combining the 3 domains in this measure, 31.4% of participants endorsed that disability made them feel at least 

 for victimization in at least 1 domain. In comparison, nearly half (45.7%) indicated their disability put them 

To evaluate aim 2, we conducted an ANCOVA, controlling for traumatic exposure (in terms of the total number of personally affecting events on the LEC5) and for disability severity (using the PROMIS Physical Function measure). Categorical predictors were sex (male vs female), use of an AD (Y/N), and race (White vs racial minority). The main effect and interaction terms were computed.

The primary outcome (PRoV-D total score) was positively skewed (skewness = 1.0, kurtosis = 1.2), and examination of the quantile-quantile plot for residuals for this outcome also suggested nonnormality. To address this problem, a log

 transformation was utilized, which resulted in more favorable characteristics (skewness = .38, kurtosis =−.30). All further analyses were conducted on this transformed variable.

The overall ANCOVA model was significant (F [1,9] = 14.94, 

 < .001). As expected, both personal trauma exposure (F = 5.0, 

 = .03) and severity of disability (F = 29.2, 

 < .001) were significantly associated with higher PRoV-D scores. A main effect existed for the use of an AD (F = 10.72, 

 > .20) or race (White vs racial minority; 

 > .20). There was a significant interaction between AD use and race (F = 3.8, 

Post hoc analysis revealed that, after controlling for the severity of disability and personal trauma history, people who were from racial or ethnic minority groups and used an AD (n = 32) had the highest ProV-D scores (M = 6.9). The interaction also suggested that, for those who did not use an AD, race did not make a significant difference in perceived vulnerability (

 = .50), whereas among those who did use an AD, belonging to a racial or ethnic minority group was associated with greater perceived vulnerability (

We used linear multiple regression to determine whether positive psychological factors (resilience and self-efficacy) were associated with PRoV-D after controlling for the effects of trauma exposure and disability severity, predicting the PRoV-D outcome while adjusting for covariates. The overall model was significant (F [2436] = 55.5, 

 < .001) and accounted for 20% of the variance in PRoV-D. After controlling for personal trauma exposure and disability severity, a step including self-efficacy and resilience was significant (F change = 13.63, 

 < .001) and contributed an additional 5% of variance to the model. As expected, self-efficacy and resilience were negatively associated with PRoV-D, with similar-sized standardized β coefficients (−0.15 and −0.11, respectively, 

 < .05), suggesting that each separately contributed to the model.

To examine whether PRoV-D was related to participants’ sense of control over community participation, we used a multiple linear regression model controlling for personal trauma exposure and disability severity. PRoV-D total score was used in the final step to predict the Control Over Participation outcome. The overall model was significant (F [2433] = 49.5, 

 < .001) and accounted for 22% of the variance in the Control Over Participation score. After the inclusion of control variables, PRoV-D was negatively associated with Control Over Participation (F change = 22.1, 

 < .001; β = −0.22) and contributed an additional 4% of variance to the model (

This study is unique in its examination of perceptions of the risk of interpersonal victimization due to disability among people with MS. As hypothesized, personal trauma history and severity of physical disability significantly correlated with the perceived risk of victimization due to disability. However, even after controlling for these variables, AD use was significantly associated with greater perceived risk. This result suggests that some people with MS may perceive that the use of a visible AD makes them a target for interpersonal crime. Additionally, participants who identified as a racial or ethnic minority (ie, Black, Asian/Pacific Islander, Hispanic/Chicano, Native American/Alaska Native, or other) and used ADs reported the highest levels of perceived risk. This heightened perception of risk was associated with a lower sense of control over participation, suggesting that a person's sense of personal safety influences how much they feel that they can participate in activities of their choice. These results are consistent with previous research indicating that increased perceived vulnerability to crime reduces individuals’ social engagement and quality of life.

It is important to note that most participants (71%-82%) reported that they felt either at 

 of interpersonal victimization due to their disability. However, 11.4% to 14% described feeling that they were 

 for very serious negative events, including theft, assault, and sexual assault, because of their disability. These individuals tended to have greater levels of physical disability and were more likely to use an AD.

There was no demonstrated effect of participants’ sex on perceived risk, which was inconsistent with previous literature showing that being a woman, particularly a woman who identifies as a racial minority, is associated with an increased perception of vulnerability.

 One explanation for this difference is that our analyses controlled for lifetime trauma exposure, which was associated with perceived risk and is generally higher in women.

 Controlling for this variable may have reduced sex differences in analyses of perceived vulnerability.

When promoting community participation, rehabilitation clinicians may focus on environmental factors (transportation, resources) as well as mobility concerns (eg, ADs, car transfer training). This study emphasizes the importance of also assessing attitudinal factors, such as fear of victimization, when working with individuals with MS. What may present as a lack of adherence to recommendations for AD use may actually represent an unspoken fear for personal safety based on being targeted as disabled, especially for participants from racially and ethnically diverse backgrounds.

The most notable finding is that being from a marginalized group and using an AD was associated with the highest levels of perceived risk of victimization. Historically, MS has been considered a condition primarily experienced by White women.

 Recent research demonstrates more racial/ethnic diversity among adults with MS than previously indicated, with Black women having a higher proportional incidence than other racial groups.

 Under-recognition of MS in Black individuals should be viewed within the context of historical marginalization of this population. This history has contributed to group mistrust and skepticism toward the health care system and physicians. This dynamic can negatively influence patient health outcomes and behaviors, including treatment seeking and adherence to treatment plans.

Strengths of the study include using a large, national sample of individuals with MS, including men and women across the adult lifespan. The relative percentage of participants from a racial minority group was low (around 11%), but the 49 racially diverse individuals who participated were enough to allow for meaningful comparisons, a relative rarity in psychosocial MS research. Study weaknesses include a cross-sectional design, reliance on an in-house measure of perceived vulnerability due to disability, and an overrepresentation of White women (74.1%).

The perceived risk of increased vulnerability to interpersonal violence is an important and understudied factor in MS, and may be related to both participation and use of AD. Future research should continue to increase racial diversity in research, develop validated measures for perceived risk of victimization, address the limitation of dichotomous sex in research, and further evaluate the relationship between MS and lifetime trauma exposure.

Perceived Vulnerability to Disability-Related Victimization in People With Multiple Sclerosis: Community Survey on Risk and Protective Factors

Health care utilization is higher in individuals with multiple sclerosis (MS) than in the general population. However, there are limited data on the reasons for their hospital admissions. Our primary objective is to analyze the reasons for the hospitalization of individuals with MS with the goal of identifying preventable causes.

We conducted a retrospective analysis of a cohort of adults with a confirmed diagnosis of MS admitted to Duke University Hospital between January 2018 and January 2020. This yielded a cohort of 210 individuals. Data were analyzed using descriptive statistics.

The most common reason for admission was urinary tract infection (UTI; 10.3%). The average length of stay was 6.1 days for the individuals with MS vs 5.5 days for the general population. The 30-day readmission rates were 14.9% and 15.5%, respectively. A significant number of admitted patients were not on any disease-modifying therapy (DMT), and no difference in median age was identified between those with a DMT vs those without.

Length of stay and readmission rates were similar to those of the general population in this contemporary cohort. Given the prevalence of bladder dysfunction in MS, it is not surprising that a UTI was the most common reason for admission. Actively addressing management of and techniques for bladder dysfunction may decrease the admission rate for individuals with MS. Though we now have more treatment options for MS, many individuals with the highest health care utilization are not on a DMT. Future research is needed to identify the factors that can be addressed to support these patients and reduce preventable hospitalizations.

From the Department of Neurology, Duke University Hospital, Durham, NC (DP, EL, SS). 

Danelvis Paredes, MD, MPH, 40 Duke Medicine Circle, Suite 4000, Durham, NC 27710; 

 Danelvis Paredes, MD, MPH, disclosed no conflicts of interest. Elijah Lackey, MD, has received honoraria from Doximity and EMD Serono. Suma Shah, MD, has received honoraria from Novartis and Sanofi.

 This manuscript was previously presented as a poster at the Americas Committee for Treatment and Research in Multiple Sclerosis Forum 2023; February 23-25, 2023; San Diego, California.

Multiple sclerosis (MS) is the most common autoimmune disease affecting the central nervous system, with a recent estimate of more than 850,000 people with the disease in the United States.

 The majority of individuals with MS have a relapsing-remitting (RRMS) disease course characterized by inflammatory relapses. Primary progressive (PPMS) and secondary progressive MS (SPMS) are marked by gradual disability accumulation not delineated by discrete relapse and remission. The social and economic burdens of MS span from direct disability-related individual limitations to broad downstream effects, including impacts on relationships and employment.

Prior studies have shown that people with MS are more likely to have chronic comorbid conditions that place them at risk for increased hospitalization rates and higher health care utilization following acute illness.

Cody Lo, BSc

Articles

Latest Updated Articles