Activity Transcript

Chapter 1: Understanding the Nature and Extent of Disparities in MS

Darin T. Okuda, MD, MSc, FAAN, FANA: Hello, I'm Darin Okuda. I'm a professor of neurology and director of the Multiple Sclerosis and Neuro Immunology Imaging Program here at the University of Texas Southwestern Medical Center in Dallas. Welcome to this program titled, "Case Conversations for Diverse Patient Populations with Multiple Sclerosis." For this program, I will be joined by my fellow experts, Dr Liliana Amezcua and Dr Annette Okai. And we each will be presenting some clinical evidence of disparities of care among racial and ethnic minority patients with multiple sclerosis and discuss some strategies to address such disparities. I will start this series of segments with a discussion on, "The Nature and Extent of Disparities in Multiple Sclerosis." 

Multiple sclerosis is not just a disorder for those of European ancestry. In fact, the incidence of MS is higher in Blacks than in Whites. And interestingly, Black women have a higher risk of multiple sclerosis, but not Black men when compared to those who are White.

With respect to racial and ethnic disparities in mortality related to MS, age-specific multiple sclerosis mortality patterns showed that non-Hispanic Blacks had the highest mortality rate for those under the age of 55. 

In addition, US minority populations appear to experience a more severe disease course when compared to whites. So despite a younger age, Blacks and Hispanics have a higher multiple sclerosis severity score. So this is a score that takes into account the expanded disability status scale score in the context of when symptoms first started. 

There also appears to be differential markers of accelerated disease progression in those who are Black and Hispanic as compared to those who are White. Now, one may make the argument that these different biological signatures may be the result of social determinants of health that we'll discuss, but these data suggests that enhanced peripheral blood plasmablast signatures in Blacks and those who are of Hispanic descent appear to point to something distinct between groups. So this may be related to a unique biology amongst these different races and ethnicities, or it may be a consequence of the differences in delivery of care for these individuals. Also, individuals who are Black with multiple sclerosis appear to exhibit accelerated retinal damage when compared to those who are white. 

There have been many environmental factors associated with a given higher risk of multiple sclerosis in individuals. Now, for those who are of Black or Hispanic descent, certain environmental factors may be more meaningful than others. The Epstein-Barr virus has recently been highlighted as a key viral trigger in the development of multiple sclerosis and differences with respect to outcomes may be related to race and ethnicity. Now, we've also observed that sun exposure and really vitamin D levels appear to mean different things for those who are Black or African American as compared to those who are white. And there may be some contaminants that people are inhaling as well, that have differential effects on how the immune system is actually behaving. And in addition to what's shown here, other dietary factors may also play a key role in risk for the development of MS over time. 

Now, the scientific literature suggests that disease is more severe in those who are Black or African American, and this may be related to social determinants of health, which encompasses many factors. It may be factors related to access to care, the quality of care that's received based on healthcare coverage, access to certain medication, but not others, systemic racism in medicine, and even culture, which does take into account a number of beliefs on how people feel that they should be cared for and really how they should really access the healthcare system. So there are a number of other factors that are still being studied now. There may not be a difference biologically in those who are Black and white. We know that 99.9% of the human genome is relatively the same amongst these groups, and so there may be other factors that may be key. And these include social determinants of health. 

The other aspect that I'd like to discuss, and this is a project related to our program, is looking at treatment access disparities and differences. We know that from a clinical trial standpoint worldwide that those who are Black represent a very small percentage of participants.

And we know that when it comes to real life use of multiple sclerosis treatments, being Black or African American really is associated with a higher rate of certain symptoms that result in their treatment transitions. And we also identified that Black or African American actually had more symptoms and remained on treatment longer than those who are white.

And there maybe a wonderful opportunity as well to change how we actually educate all patients. And the reason why I'm saying that is that for those who are Black or African American, in our study of well over 400 patients, that a perceived lack of efficacy was more than 200 times greater for those who are Black or African American relative to those who are white with multiple sclerosis. 

So in conclusion, what do these data tell us? These data suggests that more work is needed within this space, the impact of social determinants of health. So how one is able to access care, and what types of treatments are they actually able to receive? Their beliefs about treatment, their beliefs that have been ingrained within their culture. All these factors are vital in helping really the healthcare system to understand how to best optimize our treatments and the delivery of care. Some of the basic science suggests that there may be biological differences between these groups. It would be important to assess and to understand the contribution of social determinants of health to some of these findings.

In the end, we hope that there is an optimal way to treat people based on who they are, not by race and ethnicity really, but based on who that person is. 

We know that outcomes are best when there is better trust from our patients with their healthcare providers. 

We know that a good understanding of the rationale for why they're on a specific treatment, that there's better compliance, adherence, persistence when they understand why they're taking a given treatment. 

And also, I feel as if we need to do a better job in actually hearing our patients so when things aren't working for them and if this given treatment is not integrating well within their life, that they raise that concern so that a treatment transition or a discussion can follow.

Thank you for participating in the activity. Please continue on to the next segment presented by Dr Amezcua, who will focus on how disease activity impacts care in Hispanic patients.

Chapter 2: How Disease Impacts Care in Hispanic Patients with MS

Lilyana Amezcua, MD, MS, FAAN: Hi, I'm Lilyana Amezcua from the University of Southern California Tech School of Medicine, and it's my pleasure to go over how disease impacts care in Hispanic patients with multiple sclerosis. So, I like to start off with a clinical case. Imagine that you have a 32 year old Hispanic, Latinx, Latina, Spanish speaking female who presents with a possible diagnosis of MS after having an episode of optic neuritis when she was 25 years old. She had no insurance for about three years, but now she is back. She is now, however, walking with a cane. You learned that she has presented to various outside hospitals, but was told that her symptoms were part of stress. She has had, in fact, multiple visits to the ER with sensory complaints, which were also attributed to stressful events. So, what factors might have played in the delay of her diagnosis? I like to just briefly state that multiple sclerosis and Hispanics, there are certain features that we have seen in clinical studies.

One is that the average age of the first symptom may tend to be two to three years younger than what you're expected to see with white patients. And certainly in this case, her first clinical event happen at 25 years of age. The other feature that we have seen is that Hispanic individuals are two times more likely to present with optic neuritis when you compare them to white individuals with multiple sclerosis, particularly in regions of the United States in the Western side. And so in this case, we're also highlighting that her first presentation was optic neuritis.

But we've also seen is that the average age of ambulatory disability is also younger than white patients. And you can see here from the clinical case that she's arrived, she's using already a cane at a very young age. But what is also of importance here is that there has been a delay in her diagnosis, even though she presented with a common demyelinating event with optic neuritis. And this we have seen also in multiple studies when you compare them to White patients.

So, what possible patient and provider-system barriers might have played a role? Well, certainly the data suggests that there is an issue of health literacy that could have played a role, particularly this is an individual that has a Hispanic background. And MS may not be as commonly spoken about in the community, but it is also unclear how much she has access to webs, to looking at what MS might be. There is an issue of also access to care, where in fact she, at one point, lost her insurance. There could be potentially a lack of trust in the provider as well. She has been multiple times to the ER. There may be an issue of access to specialists. And although they may have the accessibility, they may not access the specialist, at least from what studies have shown, that Hispanics are 40% less likely to access a specialist. And then there's the issue of self-care behaviors, as well as the financial. From the provider, there may be an implicit bias, meaning in cultural competence as well as language. In this case, the provider may not be thinking of MS in an individual that is just because they're Hispanic, and so this may not be at the top of their differential.

The next part is the social aspects to this case, which I like to highlight. So, she finally agrees to start a disease modifying treatment, but her next visit, she fails to show up. You learn she lives about 50 miles North of the Los Angeles Metropolitan City, which is where the clinic is, and works night shifts. In one of the nurses huddles, you learn that the front desk has been inconsistent with messaging reminders to patients, particularly Spanish speaking. So, again, there's additional barriers that may be playing a role here also in this case. I like to highlight issues such as social determinants of health, which we spoke about briefly in some of those patient-provider-system barriers that we saw with her clinical presentation. But in addition here, there's the issue of language. The issue that may be that the clinic is missing a translator, but the issue of bias and racism, not only in the provider, but in the system that facilitates care, including from the front desk, as well as the issue potentially of adherence and compliance.

But before one can go to adherence and compliance, we must look at the barriers that perhaps prevented her for continuing her care. So, to close this clinical case and closing the gaps, we need to start thinking about advancing health equity. And so one of the most important things is to make sure that we engage these individuals and we empower them with knowledge about the disease and discuss the possible barriers that we may be thinking, as well as allow them to provide us the information, what barriers they may be having. Because the most important thing that we can do here is that we need to advocate for health equity, but allow them to be their own advocates. So, with that, I'd like to proceed with Dr Okai to let us know how disease activity looks in the Black and African American with multiple sclerosis. Thank you.

Chapter 3: How Disease Impacts Care in Black Patients with MS

Annette Okai, MD, FAAN: I'm Dr Annetta Okai, and welcome to this segment, 'Case Disparity in MS: How Disease Activity Impacts Care in the Black Patient.' Today we're going to talk about demystifying the typical profile of a MS patient. 

Initially thought of as a Caucasian disease, over the years we have seen that MS does occur in non-Caucasian population, especially in Black and Hispanics. Looking back at several registries, we've seen that regardless of where the registry and which registry is queried, there is a higher incidence of MS in non-Caucasian patients of MS, most especially in Blacks, followed by Hispanics.

I'll start today with a case study: starting with a 35-year-old African American woman, who 2 years prior to diagnosis presented with constant left-sided numbness and tingling leading to imbalance, and chest and abdominal tightness. She was suspected of having an anxiety attack and was discharged. Her symptoms improved spontaneously over a few weeks. Six months prior to diagnosis, she was again seen in the ER, had similar symptoms of numbness and tingling, but this time reported cognitive changes, described as brain fog, along with the anxiety. She was also suspected of having an anxiety attack, and again, her symptoms revolved. Six months after her last episode, she presented to the ER with painless blurred vision and partial paralysis in her left leg. She was referred for a neurological evaluation. 

MS is difficult to diagnose and there may be red flags obscuring the actual diagnosis. In the years prior to diagnosis, patients can present with neuropsychiatric symptoms including anxiety, depression, and cognitive changes. Multiple neurological symptoms with ER visits should trigger a suspicion of multiple sclerosis. Racial disparities in neurologic healthcare access and utilization may delay a diagnosis to MS. Data from a national database show that US Black and Hispanics with neurological illness, including MS, are less likely to see an outpatient neurologist, and use of emergency department services are much higher in Blacks, including hospitalization.

Back to our case study, our patient presented to the ER with painless blurred vision and partial paralysis of her right leg. Two weeks later, she consulted with a general neurologist. Her workup revealed several active and nonactive lesions in the brain as well as the spinal cord. Some of her brain lesions also demonstrated T1 hypointensity. She was diagnosed with multiple sclerosis, treated with a steroid course for her current symptoms, and started on an injectable therapy. It is important to note here that the presence of T1 hypointensity on her brain suggests significant neurological damage, and that has been shown to affect cognition early on. She also had spinal cord lesions, both active and nonactive, suggesting that her risk of future disability is increased.

Three months later, she followed up with her neurologist and reported that her symptoms have improved, but she has been less compliant with her treatment regimen due to the side effects of the treatment. She also reports that she lost her job due to poor performance. She does not seem to fully grasp the impact of her diagnosis and the prognosis. It has been noted that cognition affects how patients perceive the disease and also adherence to medication. She was advised to continue her current treatment regimen. Nine months later, she presented to her doctor with a sensory relapse. This relapse was considered minor as she did not have any motor symptoms and she was encouraged to maintain her current treatment regimen. Noted here is that the patient had 2 relapses in the year following her diagnosis, and this is an indication that a change in therapy is warranted along with the fact that she is having tolerability issues.

Patients from minority ethnic groups have more impaired cognitive function. Cognition is impacted in all MS patients, although it is more pronounced in Blacks. There are more challenges in explaining the diagnosis, treatment, and care for the healthcare provider, more challenges to advocate for themselves for the patient, and more challenges in maintaining treatment adherence for the patient. 

In conclusion, experience for patients from minority background with MS care, challenges remain in accessing MS specialized clinics, receiving treatment from a MS specialized neurologist, being offered a wide range of treatment options, and the impact of cognition on MS affects the understanding of the disease, affects how patients advocate for themselves, and affects how they maintain adequate treatment adherence. Please continue on with the following segment discussing how social cultural perceptions can impact MS care.

Chapter 4: How the Patient’s Sociocultural Perceptions Can Impact MS

Lilyana Amezcua, MD, MS, FAAN: Hi, I'm Lilyana Amezcua, associate professor of neurology from the University of Southern California, Keck School of Medicine. It's my pleasure to be here today to talk about how the patient's sociocultural perceptions can impact MS.

So I'd like to start off by just discussing what are illness perceptions, and the perceptions in multiple sclerosis. Illness perceptions have been reported to be important determinants of MS-related wellbeing. Individual's perceptions of illness (IPS) is a complex, multidimensional process, comprising cognitive representations or beliefs that patients have about their illness. Illness perceptions are important determinants of behavior, and they have known to impact treatment adherence, as well as functional recovery.

So according to the Health Belief Model, readiness to take action is based on the following beliefs or conditions. Of course, demographic variables may play a role, as well as psychological characteristics. But one of the things that a patient may be asking is, "How susceptible am I to this disease?" So this is what we refer to as perceived susceptibility. "What is the threat to my health? Is it serious?" So the perception of severity. And "I perceive that the benefits of the recommended action outweigh the barriers or the cost" Which may provoke health motivation. And so other considerations and thoughts the patient may be having is, "Am I confident I can carry out what is being proposed on the plan?" And, "What cues to action are present to remind me to take of the action?" And so really all of these perceptions play a role into allowing the patient to take action.

So when we think about illness perceptions, we also should be considering what are sociocultural perceptions and how may they impact MS? So all cultures have systems of health beliefs to explain, again, what causes illness, how it can be cured or treated, and who should be involved in the process. Some of the social cultural perceptions we've seen in Black patients with multiple sclerosis is that they fall to spirituality, supernatural illness perceptions, and cultural coping strategies such as faith. And these can actually be quite positive because what has been found is that a person who is spiritually healthy can experience a range of positive effects, such as the ability to cope with stress, psychological wellbeing, they can have decreased depression, anxiety, and positive healthy connections with others, including better physical health. 

Sociocultural perceptions and attitudes in the Hispanic patient may differ slightly. So one of the things that Hispanic culture is characterized by, is by strong values, attached to family and cultural beliefs. So some of our studies have shown that there are certain cultural idioms of distress that may play a role in how they perceive MS. And this includes “Susto” and “Tristessa” which has to do with how again, that illness perception derived. And “Susto” refers to an individual that was exposed to a big stress that allowed the soul to leave the body and then come back, which then brought on the disease. But there are some aspects to these perceptions, which is called spiritism, which is slightly different than spirituality, whereby health is defined synergistically as a continuation of mind, body, and spirit. And what has also been shown in Hispanic patients with MS is that there's a positive response to film. In fact, in addition to these sociocultural perceptions, we are learning that there are certain attitudes and the attitudes also contribute to them again, taking action to, for example, the plan proposed. And this has been found using focus groups, both that disease prognosis is one of their top concerns, as well as the culture and family response that happens after being diagnosed, which provokes a consequence. And the importance of education and awareness, not just about them understanding the disease, but about their family and community also understanding it plays a role.

So ultimately, understanding how social, structural, and psychological and cultural factors affect MS and being sensitive to these factors can make important difference in health outcomes. So moving forward, this is quite important for all of us physicians to consider when we face ourselves with an individual with multiple sclerosis, to be sensitive to what their illness perception is. Thank you. And with that, I'd like to thank you for your attention. I'd like to thank Dr Okai and Dr Okuda for being part of the session, giving more knowledge about how MS affects underrepresented populations. Please don't forget to go to the next activity and tell us how we did. Thank you.