Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences

Abstract

Background

Multiple sclerosis is a neurodegenerative and neuroinflammatory disease causing a variety of symptoms, involving physical and cognitive domains. Previous research has demonstrated that racial disparities are prevalent in multiple sclerosis neurological outcomes, with Black individuals facing worse disease outcomes than their White counterparts.

Objective

To examine the race- and place-based differences in experiences with multiple sclerosis care among Black and White participants.

Methods

Qualitative data were collected from 20 adults with multiple sclerosis during four focus groups and ten individual semi-structured interviews. Focus groups and interviews were audio-recorded, transcribed, and coded in NVivo. Thematic analysis was used to identify dominant themes.

Results

Thematic analysis resulted in the following themes: health care quality, health literacy, patient-provider communication, multiple sclerosis, place, and race. Similarities and differences between Black and White participants were identified that may be fruitful areas for intervention to reduce existing disparities.

Conclusions

Both Black and White participants described positive experiences they have had with their multiple sclerosis care. However, only Black participants discussed the role of health insurance and facing discrimination. Only White participants reported residing in an area with access to many providers.

Keywords

Multiple sclerosis racial disparities place-based disparities access to care healthcare quality patient experiences

Introduction

Multiple sclerosis (MS) affects 2.3 million people in the US and is a leading cause of disability worldwide.^1,2 Significant racial disparities in neurologic outcomes exist in MS.³ The weathering hypothesis provides a theoretical framework for understanding these disparities,⁴ positing chronic social and economic stressors can exacerbate physical health decline, thereby contributing to racial disparities in health conditions. Weathering is more evident in minoritized groups.⁴ Structural racism, which is the racial discrimination that is deeply embedded within the systems of our society, is a major driver of disparities in neurological populations through high poverty levels, poor health insurance, and reduced access to care.^5–7

Data from other neurological populations indicates significant racial disparities in health care and outcomes, many of which are modifiable.⁸ Frequently reported inequalities in neurologic care include racial/ethnic discrimination, economic problems, educational level, and geographical location.⁹

In MS, the evidence on disparities in modifiable factors of health care is limited. The existing literature indicates, for example, that Black women experience challenges with providers not considering an MS diagnosis based on the misconception that it is a White disease.¹⁰ These findings suggest the need for additional research on the complex, modifiable factors contributing to racial disparities, particularly because they elucidate future areas for intervention in MS.

Previous qualitative research has examined factors affecting quality of life¹¹ and patient experiences with disease and care in MS.¹² To date, no studies have explored MS race- and place-based disparities in MS care modifiable factors from a qualitative lens, which can allow for additional context and understanding of patient experiences.¹³ There is a need to understand the context of the racial disparities in MS care from patients themselves.^14–16 This qualitative study explored race- and place-based disparities in MS care experiences between Black and White participants.

Methods

Design

Audio-recorded interviews and focus groups were conducted with MS patients who agreed to be contacted for future research when they participated in a previous study. Participants’ responses to a survey from the other study about demographic information were used to inform recruitment and data analysis. The [details omitted for double-anonymized peer review] Institutional Review Board approved this study.

Participants

Participants were ≥18 years old, self-identified as Black or White, self-reported a provider-confirmed MS diagnosis, and did not report significant cognitive impairment that hindered their ability to provide informed consent.

Study procedures

Purposeful sampling was used to recruit historically marginalized groups whose perspectives have largely been omitted from the existing MS literature.^{3,4,11,12,14–16} Purposeful sampling can mitigate mistrust and enhance participation within historically underrepresented communities¹⁷ and has been used by health disparities researchers.^18,19 The current study recruited 50% of participants whose self-reported combined household income was <$50,000, which was chosen as the threshold as it was the mid-point in the salary categories presented in the survey from the other study.

Participants were contacted using a standardized script (Supplemental Table 5) and provided informed consent. All participants chose to participate in virtual visits over Zoom during October-November 2023. Participants were offered focus groups, and individual interviews were scheduled for those who were unavailable to participate in focus groups and/or expressed preference for individual interviews.

The final sample included 50% Black and 50% White participants. 50% who identified as being low-income (<$50k), and 50% as high-income (≥$50k). Four focus groups (n = 10), and 10 interviews were conducted. Each focus group consisted of ≤3 people, three of which were stratified by race and income. To increase accessibility to participation, the fourth group was open to both racial and income groups. The moderators were two early-career Asian Indian women. Focus groups and interviews lasted ≤60 minutes and were conducted using a semi-structured interview guide (Table 1) to discern potential group effects on participant responses. Participants were compensated with a $40 Amazon gift card.

Table 1.

Focus group and individual interview guide: topics and questions.

<This interview guide was revised iteratively to further explore common themes that may emerge in the first few interviews.>
Now, I am going to ask you questions about your experiences related to race, where you live, and health care related to multiple sclerosis (MS). This interview is expected to take about one hour, though the time can vary depending on the questions and responses. As a reminder, the interview will be audio-recorded. Do you have any questions for me before we begin?

Race You identified your race as ______________ (African American, black, white, or any other option listed in the online instrument).

What does your race mean to you?

What does it mean to you as a patient?

Place

How would you describe the place where you live?

What are the attitudes of the individuals who live in your neighborhood about getting health care?

How convenient is it for you to get from where you live to your health appointments?

Is there anything about where you live that makes it easier or more convenient to attend your appointments for MS?

Is there anything that makes it more difficult?

Health Literacy

How much information do you feel like you have about multiple sclerosis?

Think about the last appointment you had with your MS provider.

How was information provided to you?

How much information do you feel like you received?

Patient-Provider Communication

What are some of the most important aspects of the relationship between a patient and the doctor?

How has your relationship been with your MS providers?

How has your communication with your MS providers been?

Are there any aspects of the relationship or communication style that you think are helpful?

What aspects of the relationship or communication style are not as helpful?

Level of Patient Engagement in Care

Can you please describe what patient engagement means to you?

Based on this definition, how would you describe your level of engagement in care related to multiple sclerosis?

How do your MS doctors describe patient engagement?

Overall Quality of Health Care related to MS

How has the overall quality of MS care been?

What have you particularly liked or enjoyed about the care you receive?

What aspects of the care that you receive do you wish you could change?

Comments or Questions

Do you have additional comments or questions you’d like to add?

Data analysis

Transcribed data were analyzed with NVivo 14²⁰ to conduct thematic analysis.²¹ The initial codebook consisted of the overarching themes from the interview guide and subthemes that emerged from data analysis.

Qualitative data were analyzed iteratively. First, focus group transcripts were double-coded by the first and senior authors. These codes were audited by the second author to ensure trustworthiness, reliability, internal validity, and external validity.^22,23 Next, using the codebook all interview transcripts were coded by the first author. 60% of these were double-coded by the second author. Conflicts between the coders were resolved by the senior author to increase interrater reliability. The small sample size and demographic makeup of focus group participants minimized the impact that the method of data collection (focus group vs. interview) had on the results. Therefore, codes from the interview and focus group data were pooled and analyzed together to create one codebook (Supplemental Table 6). The research team regularly met to discuss data analysis and codebook alterations.

Results

Demographics

The sample consisted of 20 participants who were 46.7 years old (SD = 1.48), on average, 70% female, and 50% with ≥ master's degree. “Place” was determined in terms of geographical area (e.g. urban South Atlantic).²⁴ Participant demographics and MS clinical characteristics are given in Table 2.

Table 2.

Participant-reported demographic and clinical characteristics, overall and by race.

Characteristic	Overall N (%)	Black n (%)	White n (%)
Total	20 (100)	10 (50)	10 (50)
Sex
Female	14 (70)	8 (80)	6 (60)
Male	6 (30)	2 (20)	4 (40)
Age, years	46.7 (14.8)	44.5 (14.9)	48.9 (14.9)
Place (geographical area)
Middle Atlantic	2 (10)	0	2 (20)
Urban	2 (10)	0	2 (20)
South Atlantic	18 (90)	10 (100)	8 (80)
Urban	16 (80)	9 (90)	7 (70)
Rural	1 (5)	1 (10)	0 (0)
Missing	1 (5)	0	1 (10)
Education
High school/GED	4 (20)	3 (30)	1 (10)
Bachelor's	6 (30)	2 (20)	4 (40)
≥Master's	10 (50)	5 (50)	5 (50)
Insurance
Private	10 (50)	5 (50)	5 (50)
Government	8 (40)	4 (40)	5 (50)
Uninsured	2 (10)	2 (20)	0
Marital status
Married or in a domestic partnership	11 (55)	4 (40)	7 (70)
Single, never married	6 (30)	4 (40)	2 (20)
Divorced	3 (15)	2 (20)	1 (10)
Employment status
Employed full-time	15 (75)	7 (70)	8 (80)
Not working	5 (25)	3 (30)	2 (20)
Retired due to MS	1 (5)	1 (10)	0
Receiving SSDI	2 (10)	0	2 (20)
Unemployed	2 (10)	2 (20)	0
Household income
>$20k	3 (15)	3 (30)	0
$20k–$49k	6 (30)	2 (20)	4 (40)
$50k–$100k	6 (30)	4 (40)	2 (20)
<$100k	5 (25)	1 (10)	4 (40)
Smoking status
Current smoker	3 (15)	1 (10)	2 (20)
Former smoker	4 (20)	3 (30)	1 (10)
Never smoker	13 (65)	6 (60)	7 (70)
Years between
Sx Onset and Dx	2.8 (6.4)	3.4 (8.3)	2.2 (4.3)
Dx and Provider	0.5 (3.7)	0.1 (0.9)	0.9 (5.1)
Provider and Dx	−0.5 (3.7)	−0.1 (0.9)	−0.9 (5.1)
Sx Onset and Provider	3.3 (7.1)	3.6 (8.2)	3.1 (6.3)
Disability status (PDDS)
Normal	6 (30)	3 (30)	3 (30)
Mild, moderate, or gait	10 (50)	4 (40)	6 (60)
Early/late cane	4 (20)	3 (30)	1 (10)
MS exacerbation ≤12 months
Yes	8 (40)	5 (50)	3 (30)
No	9 (45)	2 (20)	7 (70)
Unsure	3 (15)	3 (30)	0
No. of MS specialists seen
1 specialist	4 (20)	3 (30)	1 (10)
2–5 specialists	14 (70)	7 (70)	7 (70)
≥6 specialists	2 (10)	0	2 (20)
Receiving routine MS care
Yes	15 (75)	8 (80)	7 (70)
Occasionally	4 (20)	1 (10)	3 (30)
No	1 (5)	1 (10)	0

Values reported are number of participants (%), except for age and years between clinical encounters for which means (SDs) are reported.

Themes

Participants were given identifiers (e.g. BFH, BFL, WFH, and WFL) based on race (B = Black, W = White), gender (F = female, M = male), and income (H = high, L = low). Findings from the thematic analysis are described below with representative quotes for each of the main themes. Example quotes for all themes are presented in Table 3. The number of participants overall and from each racial group who commented on themes is summarized in Table 4.

Table 3.

Themes and sample comments from focus group and individual interview participants.

Theme	Sample Comment
Healthcare quality
Positive sentiment	“I can say that the quality of care that I have received has been good.” (BFH)
Patient-centered care	I think a personable doctor, somebody who genuinely cares. I appreciate the fact that the doctors have a lot of patients … but when a doctor can remember something personal about me, it makes me feel like they truly do care about me.” (BFH)
Quick diagnosis	“She took a look at the scan I had, ordered another MRI … and she immediately was like, "Look, you've got MS." (WMH)
MS specialist or neurologist	“I feel like I’m starting over … with this new neurologist and understanding what MS means for me and what can happen, what I should expect.” (BFL)
Neutral sentiment	“Other than that, I wouldn’t change anything.” (BMH)
Negative sentiment	“So that’s been probably one of the big frustrations for me is trying to figure out what is good care, what is appropriate care, and what is unnecessary care.” (WMH)
Complicated diagnostic process	“There’s been confusion about whether it’s MS, clinically isolated syndrome, something else. It seems like folks don’t want to agree both on diagnoses and treatments.” (WMH)
Long time to get an appointment	“It’s unbelievable how long it takes to get an appointment with somebody in a practice. An urgent care will see you the same day but that’s not really feasible for a complicated disease like this.” (WFH)
Multiple providers seen	“But yeah … mentioned it being confusing, and that was definitely the case when I was working on my diagnosis and bouncing around to doctors and different specialists … trying to figure out what was going on.” (WFH)
No MS specialist or neurologist	“The doctor that was treating me did not specialize in MS. So I wasn’t on the proper treatment plan for quite some time” (BFL)
Only prescribe medications	“There’ve been doctors, neurologists, that just really want you on a medication. Otherwise, I felt they didn’t want to necessarily treat you.” (BMH)
Health Literacy
Healthcare background	“I worked … on a medical campus … and I got a lot of information and a lot of support.” (WFH)
Validation of existing knowledge	“It just reaffirms everything that you knew what to do to take care of yourself … I'm a healthcare provider trained in medicine, so I knew what to do and I could just imagine what a person that didn't have the same background as me and had to learn everything, and … it's very scary for patients who don't have the same background as I, because I know what my patients would go through when they had MS, and even some of my colleagues.” (BFL)
Patient engagement	“I am very engaged, very—more knowledgeable than I probably would like to be about MS, but I have to be.” (BMH)
Advocating for yourself	“I think it's important with MS to be your own advocate. You have to insist that what is wrong is wrong, is in fact bothering you. That they pay attention, that they sit down.” (WFH)
Research participation	“I’m also happy with the opportunities to be part of the research studies … even if I’m not living in a time where this disease can be wiped out for me … I can contribute something to hopefully enable doctors to help other people more” (WFH)
Self-education	“it's helpful to look at the data and to look at scientific writing, but also I like to balance that out with some anecdotal things, talking to other people with MS” (WFH)
Multiple Sclerosis
Comorbid symptoms attributed to MS	“It’s a complicated disease and the symptoms are almost all things that can be associated with other disorders … So half the time I’ll … see a specialist or physical therapist and try to get treated for something, and they’ll hear." Oh, you’ve got MS. Well, it’s probably MS. No point trying to diagnose any further than that,"when the reality is it could be caused by something else that needs to be treated.” (WMH)
Invisible disability	“So people can’t see it and they don’t appreciate it. They can’t wrap their minds around it.” (WFH)
Quality of life	“I’ve got MS, I can’t play golf like I used to. I can’t go fishing or hunting. I can’t walk.” (WML)
Stopped job (MS related)	“So with the recent diagnosis of MS, I haven’t been able to fully perform my job” (BFL)
Subtype	“Then I had a relapse, which means I float between benign and relapsing, but I never went to progressive stage, which is a good thing.” (BFL)
Symptom onset	“I had my first symptoms age four, and I went all through my teen years and early adulthood” (BFL)
Symptom progression	“As I got older, when I had my worst of flare-ups, I could not function properly … I told him, "I am so fatigued. I can’t function. I’m not walking right. I can’t swallow right. I see double vision." (WMH)
Symptom types
Fatigue	“And people don’t understand when I say I’m tired, I’m not just "I’d like to take a nap," or "I need to sit down." I am bone numbing weary.” (WFH)
Gait	“Losing a lot of feeling in my legs, my legs are becoming heavier, feeling like I’m being pulled down in quicksand … I’m still walking. I concentrate really hard to walk one foot in front of the other so that I could keep walking normal” (WFL)
Mental health	"Starting in COVID, it was hard to get a provider at all because everybody needed a mental healthcare provider. Even afterwards, just finding a good fit who can get the ins and outs and the wonkiness of MS” (WMH)
Optic neuritis	“I was driving down an interstate and all of a sudden my right eye went dim.” (BFL)
Symptom variability	“One thing I’ve learned is that everyone with MS, it’s different. No one has the same symptoms” (WFL)
Patient-provider communication (PPC)
Care coordination	“My primary care physician is also engaged. She’s getting copies of some reports. She knows what prescriptions I’m taking and is always concerned about how I’m doing.” (WML)
Medical gaslighting	“I might say "I’m noticing I’m having these symptoms," and she’ll—once or twice has told me right off the bat "It’s not related to MS" (WFH)
Patient portal communication	“The … messaging service. They’re really responsive to that, so I don’t feel like if I have to get in contact with them, it’s a burden to do that, because they get back very quickly” (BMH)
Place
Access to healthcare	“I have a car, so it’s easy to get to the appointment from that point of view.” (BFH)
Distance	“I just feel like I live too far away from what I consider to be a good-quality healthcare” (BFH)
Plentiful doctors	“there’s a lot of options. So I can see any specialist, any imaging, any lab location fairly easily in the 10, 15, 20 min drive.” (WMH)
Neighborhood characteristics	“I live in a neighborhood of single-family homes. I guess you would say that it’s middle-class.” (BMH)
Community support	“My neighbors are very supportive. Being in a diverse community … I had an elderly neighbor come over and try to do cupping. I had another one try to do therapeutic massage on me … I’m insanely lucky for that.” (WMH)
Home accessibility	“Not at all conducive to an MS environment. It’s not an MS environment at all. My home is four levels … My home environment is not conducive to having MS.” (BFH)
Neighbor attitudes	“I think it runs the gamut from being very involved to somebody who’s got these problems and isn’t always compliant with meds, but then seeks it out or is involuntarily put in that position. To people who are "I’ll go if I have to." (WFL)
Positive	“Everyone in my area, plus my family have health care from what I can physically see on the outside, but yes, highly positive about receiving that.” (BFL)
Neutral	“my neighborhood is now so quiet that you barely talk to your neighbors … So, I really don’t know what their attitude towards healthcare is.” (BFH)
Negative	“There’s a lot of elderly individuals in my area, and I would say also maybe due to some political implications I feel like I haven’t heard a lot of great things in the area about believing doctors or seeing doctors.” (WFH)
Race
Discrimination	“I have met discrimination by being African American, even within my healthcare profession, having MS, people don’t want you to see their patients. They don’t want to offer you jobs and things like that, thinking that you can’t do the work because you have this disorder.” (BFL)
Culture	“I would say the culture I grew up around, being in a Nigerian based home, it just shaped me a lot.” (BFL)
Race is insignificant	“It doesn’t really mean much of anything. My face being white, doesn’t really mean much of anything to me.” (WFH)
Demographics
Age	“I think that there’s ageism. I would change how a young person with a chronic illness is treated … and so I’ve definitely seen differences in people’s assumptions on what you need.” (BFL)
Gender	“I'm tired of females being treated as if they're hysterical.” (WFL)

Table 4.

Prevalence of themes, overall and by race.

Theme	Overall N = 20	Black N = 10	White N = 10
Healthcare quality	20	10	10
Positive sentiment	20	10	10
Patient-centered care	18	10	8
Quick diagnosis	3	1	2
MS specialist or neurologist	10	6	4
Neutral sentiment	3	1	2
Negative sentiment	20	10	10
Complicated diagnostic process	13	7	6
Long time to get an appointment	5	1	4
Multiple providers seen	10	3	7
No MS specialist or neurologist	4	2	2
Only prescribe medications	3	2	1
Health Literacy	20	10	10
Healthcare background	6	2	4
Validation of existing knowledge	4	2	2
Patient engagement	18	9	9
Advocating for yourself	8	3	5
Research participation	6	2	4
Self-education	9	4	5
Multiple Sclerosis	12	7	5
Comorbid symptoms attributed to MS	2	0	2
Invisible disability	2	1	1
Quality of life	7	5	2
Stopped job (MS related)	2	2	0
Subtype	3	2	1
Symptom onset	3	3	0
Symptom progression	2	1	1
Symptom types	7	4	3
Fatigue symptoms	2	1	1
Gait symptoms	6	4	2
Mental health symptoms	2	0	2
Optic neuritis symptoms	3	2	1
Symptom variability	1	0	1
Patient-provider communication (PPC)	20	10	10
Care coordination	10	5	5
Medical gaslighting	8	3	5
Patient portal communication	9	4	5
Place	20	10	10
Access to healthcare	16	6	10
Distance	12	4	8
Plentiful doctors	5	0	6
Neighborhood characteristics	10	5	5
Community access	7	1	6
Community support	6	3	3
Home accessibility	4	3	1
Neighbor attitudes	14	6	8
Positive	9	4	5
Neutral	6	3	3
Negative	2	0	2
Race	20	10	10
Discrimination	6	4	2
Culture	3	2	1
Race is insignificant	9	1	8
Demographics	5	3	2
Age	2	1	1
Gender	3	2	1

Theme 1: Overall healthcare quality

Participants responded to: “How has the overall quality of your MS care been?”

Positive experiences: All participants described positive experiences with MS care. Eighteen participants enjoyed when doctors engaged in patient-centered care, such as listening to the participants, working with them as part of their care, breaking down MS topics, and discussing personal factors that are relevant to their MS and care. Several participants discussed that having an MS specialist noticeably enhanced the quality of their care:

A lot better [than] I was around a time when they were still trying to figure out what was going on with me … I wasn’t seeing an MS specialist … But then when my symptoms progressed, that's when he referred me out to see the finest specialist and that's when I came across the doctor that I have now … And it's been fine. It's been good. I have really no complaints. (BFL)

Negative experiences: All participants discussed negative experiences in their MS care. Thirteen participants reported having a complicated diagnostic process taking several years and being misdiagnosed multiple times. Several participants saw multiple providers due to feeling unsatisfied with their care or having providers leave their practices. Some participants expressed frustration for not having an MS specialist and experiencing long wait times for an appointment.

Theme 2: Health literacy

Participants responded to questions such as “How much information do you feel like you have about MS?”

Healthcare background: Some participants gained healthcare knowledge from family members in the field or through formal training, which they felt enhanced their understanding of care and increased access to healthcare resources.

Patient engagement: Eighteen participants mentioned being engaged in their care, such as actively expressing their needs, reading scholarly articles, and participating in MS organizations and/or research studies. Most participated in research to progress the understanding of MS, but one participant was involved to help afford her MS care:

Paying out of pocket for getting an MS diagnosis in America, it's very expensive. There were times where my doctor … explained to me what the studies were, and how I could take advantage of that to get some results that I needed to make some decisions for my health. (BFH)

Theme 3: Multiple sclerosis

Several participants described MS-specific experiences, such as changes in their quality of life (e.g. quitting their jobs due to MS) or that their doctors incorrectly attributed comorbid symptoms to MS. Many participants detailed an array of MS symptoms including problems with gait, vision, and mental health :

It's a CNS disease and of course it could affect your brain chemistry, and that people with MS are more likely than the general population to have anxiety and MS over their symptoms. You’re living day-to-day with the disease. You don’t know what's going to happen. You could go to sleep and wake up and never be able to walk again. (WFL)

Theme 4: Patient-provider communication (PPC)

Participants were asked questions such as “What are some important aspects of the relationship/communication style with your MS providers?”

Medical gaslighting: Some participants reported experiences of medical gaslighting.^25,26 Participants discussed having providers communicate that they did not believe their patient had MS or MS-related symptoms and getting diagnosed with other diseases, such as mental disorders (e.g. bipolar disorder).

Care coordination: Participants mentioned a beneficial aspect of their PPC was having an open line of communication between themselves and their multiple healthcare providers.

Patient portal communication: Most participants felt that the patient portal platform to communicate with their healthcare team was an easy, quick way to contact their providers.

Theme 5: Place

Participants were asked questions such as, “How would you describe the place where you live?”

Access to care: Sixteen participants discussed factors relevant to their access to MS care, including distance to their providers, the number of providers they have access to, traffic, transportation, and commute time. Six White participants discussed living in an area with many hospitals and providers but needing to travel further for their MS appointments. Three Black participants (BFH, BFH, and BFL) discussed the importance of having health insurance:

It started off amazing because…I had a good job and good health insurance, but I would say that my MS care has plummeted in that respect, because now I don’t have the same insurance, and so what I see is the difference of how you’re treated as a person with really good insurance and PBOs and everything and a person with MS who does not have insurance. I see a severe difference in that. (BFL)

Most participants reported driving to appointments, which allowed for ease of access, but one participant explained a barrier:

Because I don’t have a car … I have to rely on public transportation, which is tricky—can be tricky … It's always planned out in advance, so I can make preparations accordingly. (WFL)

Some participants expressed that =, they were willing to travel long distances to get quality care:

Because I like the quality of the service I’m getting from my current neurologist, I am afraid that if I change it, it might not be the same. So, I’m very, very hesitant to—I would rather travel five hours or even six hours to get to see Dr [ANONYMIZED] than try and even think about looking for another doctor. (BFH)

Neighborhood characteristics: Ten participants described aspects of their neighborhood, such as the types of houses they live in and their neighbors. Most lived in “single-family homes” in “suburban neighborhoods.” One participant noted a difference in the two communities she had lived in:

The neighborhood I live right now is very safe. It's very upscale and up-class. It's also very White, if I should say that, considering I’m Black. It's a very White neighborhood. It's much better than where I was before … it was a low-income community. So, it was majority Black within that … community that I lived. There's obvious differences between where I used to live and where I live now. (BFH)

Some participants discussed having a supportive community, with neighbors who assist them while walking, check in on their health, and accompany them to appointments.

Neighborhood attitudes: Fourteen participants discussed their perceptions on their neighbors’ attitudes towards healthcare. Some participants’ neighbors held positive views, such as being open to receiving health care:

I would say good, because it is upper middle class. I think, with that comes a level of education and awareness of health outcomes and taking health seriously. And we have a lot of resources. Just in this neighborhood … we have great access to care, a lot of hospitals, a lot of medical facilities. (WFL)

Some participants discussed not being aware of their neighbors’ attitudes [about healthcare] or that their attitudes greatly varied.

Theme 6: Race

All participants responded to: “What does race mean to you as a person or patient?” Some participants also mentioned other demographic factors that they felt were more pertinent to their experiences.

Discrimination: Four Black participants (2 BFL and 2 BFH) identified experiencing race-based discrimination. Two White participants, both high-income, acknowledged that while they did not experience discrimination in healthcare, this may not be the case for everyone.

Culture: One participant described how race was intertwined with culture:

Because I did not grow up culturally with other races, sometimes it's difficult for me to perceive or detect racial injustices towards me … I now have that consciousness that because of the color of my skin, there is a tendency that I may be discriminated against … because my accent gives me away that I’m not only Black, but I’m also not necessarily from here. (BFH)

Race is insignificant: Eight White participants and two Black participants reported that their race did not mean anything to them either as a person or a patient:

Race doesn’t come into the picture at all for me. (WML)

Demographics: Female participants shared that their gender contributed to negative experiences in healthcare, and many felt that gender played a more significant role than race. Two participants identified their age as being a significant factor, with one reporting their provider thought they were “too old to be diagnosed” with MS. (WMH)

Discussion

This qualitative analysis examined race- and place-based disparities in the MS healthcare experiences of Black and White individuals. These findings contribute to the limited literature examining modifiable drivers of race- and place-based disparities in patient-reported MS healthcare experiences through a qualitative lens. Black and White participants had similar positive and negative experiences in their MS care. However, only Black participants (n = 3) discussed the impact of health insurance, one Black participant participated in research to afford MS care, and only White participants (n = 6) reported that they lived in an area with access to many providers. This may suggest disparities in access to care, regarding affordability and the area the patient lives in.

When asked about the role of race in MS care, only Black participants reported facing discrimination. Of the three participants who discussed their culture, only one Black participant expressed how her culture along with her race may have led to discrimination. Of the ten White participants, two mentioned that while they did not feel that race affected their care, they recognized that others might have different experiences. Among the ten participants who reported that race was insignificant, eight were White. Of important note is that one Black participant was in a focus group with two White participants, which may have influenced her responses. These results may suggest that experiences with racial discrimination are prevalent for Black participants with MS, highlighting the need for more inclusive healthcare practices.

It is important to consider the role that systemic racism plays in “Place” and health disparities. For example, redlining has been associated with poor health outcomes and neighborhood environmental characteristics,²⁷ which may contribute to racial health disparities. Further, the concept of “Blacks’ diminished return” demonstrates how Black individuals experience reduced protective effects from increased income when it comes to chronic health conditions.²⁸ This also contributes to racial health disparities.²⁸

The current study had some limitations. Patients received care at a top-tier MS Center, resulting in a population that may be more privileged than the larger community. They agreed to be contacted about future research and had access to the internet to communicate with their providers between visits. The target length of the individual interviews was 60 minutes, although due to participant responses and/or availability, over half of the interviews were shorter, which may have led to less information for analysis. The moderators were cognizant of the sensitive topics discussed, (e.g. racial identity and experiences), and moderators prompted detailed responses based on the strength of their working relationship to respect participant privacy and boundaries. Further, as participants only self-reported total household income, other financial information may not have been addressed (e.g. investments, gross and net income). Finally, compensation of a $40 Amazon gift card may have resulted in selection and response biases.

Future research should examine racial disparities in patient healthcare experiences and MS clinical characteristics (e.g. presence of lesions on MRI scans) to provide deeper insights into the association between racial disparities in patient-reported experiences and clinical outcomes. Researchers should include other minoritized groups, such as Latinx and Asian American MS patients,²⁹ due to the limited data on these populations. Future research should investigate the role of racism in health disparities within Black populations and other minoritized groups to highlight the mechanisms behind these disparities. Further, as females are more likely to develop MS compared to males,³⁰ it is important to examine how intersecting factors of sex and race relate to MS care, particularly the experiences of Black women. The current study included 50% of participants with > master's degree; future studies should include participants with varying education levels to examine how education relates to MS care experiences. The findings were minimally related to cost-of-living variations, as all but one participant lived in an urban area. Future work should study how differences in cost-of-living can relate to experiences with MS care. Additionally, given that it is difficult to ascertain whether discriminatory behavior is based on race, it is important to further explore the role of culture in healthcare experiences.

MS providers should develop strong multicultural training around diagnosis, treatment, prognosis, and the needs of minoritized patients. Due to the small sample size and convenience sampling, the findings should be considered exploratory, and future research should use a larger, more representative sample and validated measures of key constructs to identify and quantify race, place, and MS care experiences. Addressing racial disparities is an important step in improving patient experiences with MS care and outcomes.

Supplemental Material

sj-docx-1-mso-10.1177_20552173251336753 - Supplemental material for Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences

Supplemental material, sj-docx-1-mso-10.1177_20552173251336753 for Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences by Kavya Bhattiprolu, Brett L Opelt, Miranda R Jones, Abbey J Hughes, Meghan Beier, Ellen M Mowry, Keshia M Pollack Porter, Lisa A Cooper and Jagriti “Jackie” Bhattarai in Multiple Sclerosis Journal – Experimental, Translational and Clinical

Supplemental Material

sj-docx-2-mso-10.1177_20552173251336753 - Supplemental material for Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences

Supplemental material, sj-docx-2-mso-10.1177_20552173251336753 for Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences by Kavya Bhattiprolu, Brett L Opelt, Miranda R Jones, Abbey J Hughes, Meghan Beier, Ellen M Mowry, Keshia M Pollack Porter, Lisa A Cooper and Jagriti “Jackie” Bhattarai in Multiple Sclerosis Journal – Experimental, Translational and Clinical

Footnotes

Consent to participate

Participants gave verbal informed consent.

Consent for publication

Not applicable.

Data availability

Not applicable.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute on Minority Health and Health Disparities (NIMHD) of the National Institutes of Health (NIH) [grant #K23MD014176], the National Multiple Sclerosis Society (NMSS) [grant #MB-1907-34637], and the Johns Hopkins Center for Health Disparities Solutions (HCHDS) Pilot Award [grant #U54MD000214]. The co-authors of this manuscript are also supported by Patient-Centered Outcomes Research Institute (PCORI), Biogen, Genentech, UpToDate, and BeCareLink, LLC. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or any other funding body.

Ethical approval

The [details omitted for double-anonymized peer review] Institutional Review Board approved this study.

ORCID iDs

Kavya Bhattiprolu

Brett L Opelt

Jagriti “Jackie” Bhattarai

Supplemental material

Supplemental material for this article is available online.

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