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Preroll: The University of Florida, College of Medicine is accredited by the Accreditation Council for Continuing Medical Education, ACCME to provide continuing medical education for physicians. The University of Florida College of Medicine designates this enduring material for a maximum of 0.25 AMA PRA category one credit. Physicians should claim only the credit commensurate with the extent of their participation in this activity.

Melanie Cole (Host): Welcome to UF Health Med Ed Cast with UF Shands Hospital. I'm Melanie Cole and today we're addressing diversity challenges in Parkinson's Disease treatment. Joining me is Dr. Adolfo Ramirez-Zamora. He's an Associate Professor in the Department of Neurology and Division Chief of Movement Disorders at the University of Florida College of Medicine. Dr. Ramirez-Zamora also practices at UF Health Shands Hospital in Gainesville, Florida. Dr. Ramirez-Zamora, thank you so much for being with us today.

This is such a great topic. And as we get into the diversity challenges that these patients face, can you help us to recognize the clinical symptoms of Parkinson's Disease, some of the early signs and symptoms, the clinical presentation, just set the stage for us a little bit, if you would.

Adolfo Ramirez-Zamora, MD (Guest): Yeah, absolutely. Thank you so much, Melanie, for the invitation. This is really a pleasure and a great opportunity for me to talk a little bit about the challenges when understanding Parkinson's Disease in the setting of diverse population. But, like you suggested, let me just go over really quickly about how do we diagnose, what are the symptoms of Parkinson's Disease?

Parkinson's Disease has been considered a disease of movement for quite some time. The main features of Parkinson's, the ones that most of us may be able to recognize and relate to are difficulties with gait and balance, shuffling gait, problems with posture. Patients with Parkinson's tend to stoop forward.

And then they also have an inability to pick up their feet when they're taking rapid steps. Another common symptom of Parkinson's is the presence of tremor. A tremor that occurs like a rhythmic, regular, involuntary movement that tends to occur when you are moving your body. Finally, patients with Parkinson's Disease, typically have reduced speed of movements, which is actually what characterizes Parkinson's, is this inability to move fast and perform fine precise movement with the right amplitude and the rhythm of the movement. We now know that about 30% of patients with Parkinson's don't have tremor.

And despite all the advancements that we have seen in the field, when it comes down to brain physiology and genetics and molecular biology, et cetera, the diagnosis of Parkinson's remains a clinical diagnosis. You need to have the combination of the symptoms that I mentioned above, to really fulfill the diagnosis of Parkinson's.

And sometimes that could be quite challenging, particularly at the beginning. Finally, as a quick note, we now understand that Parkinson's is more than just a movement disorder. There's a variety of symptoms that are very common and prevalent in Parkinson's Disease that are what we call the non-motor symptoms. These are symptoms that affect other systems in the body and they range from disorders of the gastrointestinal tract with constipation being one of the most common symptoms in Parkinson's, to problems with emotion, problems with depression, anxiety, sleepiness, fatigue, trouble with sleep, which is also very, very common. So we now really see and understand Parkinson's as a disease that affects multiple organs. Although the diagnosis relies in some of these specific motor movement features.

Host: Well, thank you for that Doctor and for other providers that are working with Parkinson's patients, and data's shown that people from racial or ethnic minority groups are less likely to receive preventive health care and across the board, these ethnic groups have faced a disproportionate health burden. Can you talk to us a little bit about the unique challenges that these communities have faced in terms of healthcare disparities and some of those challenges specifically faced in patients with Parkinson's and you can also add in how common this is in diverse populations.

Dr. Ramirez-Zamora: Certainly. No thank you. That's a really great point. For the past decade, we are increasingly aware of the challenges of the disease in other racial and ethnic groups. One of the misconceptions for years was that Parkinson's Disease was much more common in people with Caucasian backgrounds. But now we recognize that Parkinson's is actually very common in other populations and African-American populations and the Hispanic populations as well. It's also becoming increasingly known that some of the symptoms, that there's a disparity of symptoms between these groups, that patients with minority or underrepresented communities, they appear to have more of these non-motor symptoms.

There's an increased burden of symptoms that are not necessarily motor, especially early in the disease. And also we are seeing trends when it comes down to management that the use of certain medications appears to be more prevalent in certain populations. The changes in quality of life related to treatment appears to be different among different groups.

This is just really the tip of the iceberg. We really don't have a lot of data when it comes down to management and research in these groups. There is a significant challenge in providing access for patients of underrepresented minorities in medicine to reach our clinics, to be part of clinical research. There are challenges that range from trust in the medical system, access to transportation, access to care, ability to participate in research studies based on language, transportation issues. In some instances now with the recent pandemic, health or technology literacy, the need of having somebody else in the house to allow you, to help you to be able to participate on some of these treatments. There are a variety of challenges that speak to the lack of research and understanding of how to better serve these other populations. There's very limited information and very limited data.

We also know that it's likely that the numbers that we have regarding the disease, they don't really represent the impact, the range of this problem. We estimate that there's about 50 to 60,000 new cases of Parkinson's Disease per year here in the US which comes down to maybe having a little over 1 million people with Parkinson's Disease living in the US. But as I mentioned before, because of the challenges on the diagnosis, because of the insidious nature of the disease, it's very likely that a lot of patients that are suffering or they're having the disease, are either misdiagnosed with other problems with tremor or other problems with walking, not necessarily Parkinson's. And it's also possible that they're just not looking for, they're not accessing medical care.

Part of it may be especially in the underserved populations related to ability to get to the clinics or problems with communications with different providers. So, there's a wide range of challenges that these populations are facing to really get into our clinics and trying to better understand the differences between patients from different backgrounds when it comes down to response to treatment, response to research and ability to access certain therapies. We know that looking at some of the available data, patients from underrepresented backgrounds have less access and less participation in behavioral or non-pharmacological strategies to help with their symptoms ranging from physical therapy, occupational therapy, participation in certain social activities and groups, et cetera, limited access to psychiatric care as well.

Host: So interesting. What great points that you've made. So, can you tell us about some initiatives that you're involved in, on how to increase diversity into your clinical practice, initiatives for Parkinson's patients that you'd like to share with other providers?

Dr. Ramirez-Zamora: One thing that I would like to mention to start, is that one of the largest observational studies in Parkinson's Disease, the Parkinson's Outcome Project, that study has been running for about over a decade. And it has over 13,000 patients that are followed longitudinally to try to get a sense of what are the best practices, how can we improve outcomes in patients with Parkinson's Disease? When the leadership of the study recently looked at the diversity within the cohort, it became very clear that most over 95% of the patients were white, Caucasian background. So, the leadership of the study is really shifting gears and looking at underrepresented populations and trying to encourage and facilitate research opportunities to learn more about why are these patients not getting into the study. And are there any differences in treatments, differences in outcomes or response to different medications on the intervention side? I think that's a great initiative that is gonna really give us a lot of information about the long-term outcomes and progression of the disease.

One local initiative that we have is that we recognize in our own clinics, the challenges to get a diverse population to our clinic. We are trying to increase educational activities in our area, including our county. And we submitted a couple of small proposals looking at funding opportunities to really reach out to the different populations locally, and something that we have recognized is then the strategy, it may be different among different populations. So, it's always helpful to know what are the under engaged or underrepresented minorities in your area to develop a strategy. We are trying to, we have this program where we're trying to reach the African-American community and we are discussing the importance of early diagnosis and access to adequate care. And we're bringing some of this information as educational opportunities, going to the local churches and talking about what is Parkinson's Disease. Why it's important to have a diagnosis and to engage with a provider that's an expert on the field.

And one critical point of that approach is that we need to open our doors. So, we're actually offering relatively faster appointments compared to someone that they will just pick up the phone and call our clinic with the idea that we can direct their care, even if they don't have Parkinson's, but just have a much more open dialogue between the community and the providers and open access as well to our clinics. In the Hispanic population, we're doing something very similar.

But we are trying to reach out to other leaders in the community that can spread the word and talk to other families and other patients to really try to get the right information to a larger group of people as much as possible, so we can also get them into our clinics. The Parkinson's Foundation, it's also really ahead trying to promote these initiatives when it comes down to research. And there are variety of groups across the countries that are called promotorres. That what they do is that it's a training program for family members that want to be engaged, that physician or other health care providers will educate and train somebody that can go then go back to the community to go to the local support groups, to go back to churches, to go back to community events and then be a promoter, being somebody that can promote education and understanding of the disease, and then facilitate that dialogue and connection with the local movement disorders center to really try to get into our clinics much more efficiently and facilitate some of those challenges, including, education and transportation and the needs that are specific to the diverse population.

Host: Wow, that was so informative. So, Dr. Ramirez-Zamora, given the complexity and increasingly complex treatment algorithms, and, you know, we're learning more about this disease all the time. Tell us a little bit about the importance of a multidisciplinary approach for these patients specifically, and also as physicians play a critical role in addressing all these public health concerns you've just brought up, tell us a little bit about how you would like physicians to work together, work with you all at UF Health Shands Hospital, and this multidisciplinary approach to tackle these diversity challenges.

Dr. Ramirez-Zamora: You're absolutely right. With the increasing complexities in the management and the understanding of this disease, we realize we recognize that you can not do it all. We need a team of providers and a team of physicians that can really help to target all the symptoms. As I mentioned before, Parkinson's has changed from a disease that will affect primarily movement into a disease that has a variety of motor and non-motor symptoms that requires the assistance and the help and the expertise of different providers ranging from pain management, psychiatry, psychology, urology, GI, you name it. So it's really critical to develop a multidisciplinary approach among physicians, but also among other providers that are critical for patient care, including occupational therapy, physical therapy, social work, speech therapy, swallowing providers.

And at Shands, at UF Health and Norman Fixel Institute, what we're trying to do is to create a center where the patient will be able to see most of the providers that they need in one visit, where when you come to the center, you can have access on the same day and on under the same roof to a physical therapist, a psychiatrist, a dietician, and maybe a neurologist or a neurosurgeon, if you need it, where they can all talk among them and then come up with a single unifying plan for the patient. There's nothing worse than having multiple providers with diverging decisions or suggestions. It's very confusing for the patient.

If I said, well, let's try to do this. And then they have another provider that says, no, I don't think that you should do that. And then another provider that is like, well, I don't know. You should try to listen to whoever the first person told you. So, it was very confusing. So having an open communication among all these different providers is key to come back to the patient and provide a unifying suggestion and a unifying plan of action.

And this is particularly critical in patients that are underrepresented. Part of that is because they may have problems with access and they're not used to this type of care, in general. The care is fragmented and there are challenges from insurance coverage or appointments that makes it quite challenging to be able to organize and coordinate this type of care. So, having that open communication and then having a single place where the patients may be able to get most of the care that they need at once, keeping in line with our hope that we see the patient as the sun and all the providers revolve around that, that may be able to break some of those barriers when it comes down to providing better care and access to patients of underrepresented minorities in medicine.

Host: Wow. So beautifully said, Doctor. That was really an excellent episode. Thank you so much. Do you have any final thoughts you'd like to leave other providers with about referral and the importance of these diversity challenges you've discussed here today for Parkinson's patients?

Dr. Ramirez-Zamora: I would like to say, that I've been talking a lot about access and for us to be able to provide care, we need to be able to communicate with everyone in the community and allow that dialogue. So there's the best doctor is not necessarily the smartest doctor, is the one that is available.

So we need to be available. And we're making that a big priority at our center that if somebody is referring patients and somebody needs to be seen, that we can actually have a policy that would allow these patients to come through our doors. We're also really increasing our diversity as well. I'm talking about diversity in all levels, making sure that when patients come to our clinic, they feel that they can talk to anyone. They can feel welcomed that they feel that somebody that looks at themselves and they can communicate freely and openly. That we have also part of our team, that diversity, cultural diversity, ethnic diversity, that would allow us to really engage these communities. And have them to come back and trust us so we can really provide better care and learn more about how can we really help them going forward.

Host: Thank you so much, Dr. Ramirez-Zamora. What a fascinating interview this was. Thank you for sharing your incredible expertise for other providers today. And to refer your patient or to listen to more podcasts from our experts, please visit UFhealth.org/medmatters. And that concludes today's episode of UF Health Med Ed Cast with UF Health Shands Hospital.

Please also remember to subscribe, rate and review this podcast and all the other UF Health Shands Hospital podcasts. I'm Melanie Cole.