This transcript has been edited for clarity.
Kathrin LaFaver, MD: Hello, and welcome to Medscape. Today we'll be discussing highlights in movement disorders from the recent American Academy of Neurology (AAN) annual meeting. I have the great pleasure of talking today to Dr Indu Subramanian, who attended the annual meeting. Indu, it's a pleasure to talk to you.
Let's jump right in. Last year, AAN's annual meeting was held virtually due to the COVID pandemic, but this year many people took the opportunity to finally get together. What were your impressions? What takeaways can you share with us?
Indu Subramanian, MD: It was a really well-attended meeting. And a lot of people came out and were excited to connect again.
There are lot of interesting directions that the AAN is going in — like topics like disparities in care, diversity, equity, inclusion, and thinking about women in our field. Our current AAN president, Orly Avitzur, is a woman, as is the president elect, Carlayne Jackson, and they're both from very different backgrounds. They've also done a lot of advocacy work and helped clinicians like us stay afloat with telemedicine.
It was a beautiful venue that offered a lot of great opportunities to network with each other, which I think many of us have been craving a lot.
Racial Disparities in Care
LaFaver: As you mentioned, highlighting racial disparities was one of the one of the focuses at this year's meeting. There was an abstract by a team at University of Texas Southwestern titled "Racial Disparities in Dementia and Parkinson's Disease Incidence, Health Care Utilization, and Outcomes Among Medicare Beneficiaries."
These researchers evaluated racial disparities in patients with Parkinson's disease and dementia by looking at a large Medicare beneficiary database from North and South Carolina. They found that, unfortunately, there were substantial racial disparities in the patients with neurodegenerative diseases of dementia and Parkinson's in this sample in terms of access to care. Compared with White beneficiaries, Black beneficiaries had a higher risk for all-cause hospitalization but were less likely to receive memory and physical therapy or hospice services, after adjustment for multiple variables. Black beneficiaries with dementia were less likely to receive dementia medications and less likely to receive even Parkinson's medication, at a hazard ratio of 0.81. It's actually quite shocking to hear those data. And finally, Black beneficiaries also spend more time in skilled nursing facilities.
This is not the first paper highlighting these disparities. So, what do we do with these data in terms of next steps?
Subramanian: We've seen these data in Parkinson's disease historically as well — that African-American and Latinx populations present with higher Hoehn and Yahr stages when they come in to see us. We're already delaying diagnosis in some populations and not getting people care early on. You and I both believe that exercise is medicine, and lifestyle approaches are important. Therefore, early diagnosis in order to get people treated and proactively picking lifestyle choices to help them keep exercising, to continue to socially connect, is important. We're really delaying diagnosis of these important medical problems of Parkinson's disease and dementia in these populations.
Disease awareness needs to increase. We need to get into these communities to educate patients that this is not part of normal aging. I think people just think you slow down or start to lose your memory when you get old. I know in some of my family members, that's been the historical thought, that people just get old and this is normal aging. Well, no, it's not.
We need to educate people about this and meet them where they are. Doing grassroots community-level work where we're going into churches, possibly finding religious and spiritual leaders that can engage the community in different types of events, can be very beneficial. It's about getting to where patients are receiving their knowledge base from. Sometimes it's the local barbershop; maybe it's a sorority or fraternity sister or brother who gives them that knowledge. We need to get it out there that these are diseases that can be treated.
Then it's about educating the primary care physicians and other folks in these communities about this gap in care. I think we need to get more specialists access in many parts of the country. I know you've practiced in rural settings as well, Kathrin, so do you have thoughts on this?
LaFaver: We need to acknowledge these things and prompt us to action to actually change things. I'd like to give a shout-out to the AAN on their new Brain & Life podcast, which is geared toward being public facing, and promoting advocacy and public education.
There was another abstract presented at AAN titled "THRIVE-PD: Transforming Health and Resilience Through Interdisciplinary Virtual Engagement in Parkinson Disease," from multiple researchers at Duke University. It was born out of the pandemic and is about reaching people with Parkinson's through virtual visits.
They took the concept of providing an interdisciplinary comprehensive care clinic to the virtual sphere and compared it with standard care. Specifically, they looked at whether it actually changed patients' level of self-efficacy or self-management skills of Parkinson's disease.
It was a very interesting concept. They looked at 50 people with Parkinson's disease and 24 care partners as well, and they found that people who did participate in the interdisciplinary clinic gained knowledge and had greater self-efficacy in managing their disease. It helped to improve access for people in rural areas but, interestingly, decreased access for Black participants, probably owing to technical issues and access to the internet. That brings us back to that disparity issue.
As someone who has a lot of experience with telehealth, what were your thoughts on that study?
Subramanian: I think it's an exciting study about getting care where it's needed. We just talked about the fact that in some of these places, there's just not the subspecialists. I think, in general, neurologists feel overwhelmed. With these subspecialists, sometimes you're seeing a patient once in 6 months, for 15 or 30 minutes.
My hope, and I know you believe in this as well, is to engage the multidisciplinary team. When you have a cadre of folks like psychologists, physical therapists, social workers, or other people that can be extenders of care and knowledge, I think it can really help patients.
It's really exciting to think about how we can use this model in not just Parkinson's, but other diseases as well.
I'm glad that they looked at racial disparities, which other researchers have historically overlooked. And their findings emphasize the digital divide. The internet is expensive. Bandwidth is often very poor in some areas. We really need to get universal internet access to people, and give them devices that are accessible and easy to use if we're going to reach everyone in an equitable way.
How Caregivers Influence Patients' Outcomes
LaFaver: That ties very nicely into the next study we're going to talk about, which is titled "Impact of Caregiver Characteristics on Patient Outcomes in Parkinson's Disease." We just talked about bringing in other team members, not having everything rely on the neurologist. In this study from the University of Pennsylvania's Parkinson's Disease and Movement Disorder Center, they looked specifically at the influence of caregiver presence and depression on patient outcomes in those with Parkinson's disease.
They conducted a retrospective cohort study using the Parkinson's Foundation Parkinson's Outcome Project data and compared people who attended clinics with their caregivers with matched controls who attended without caregivers. Their findings were a bit surprising, I have to say.
Subramanian: I think the one finding — that if you are depressed as a caregiver, your patients do not do as well — definitely makes sense. Supporting the caregiver and their mental health is crucial.
There was a bit of a quirky finding that people who had caregivers seemed to do worse in some of their outcome measures. I don't know if that is part of the nature of if you're sick enough to need a caregiver, then maybe your scores across the board may be higher.
But the piece that I was really interested in was around the mental health aspect. Thinking about the framework of the pandemic and all the patients who have been isolated out there, and then their caregivers — probably sometimes who are burned out themselves — not doing well for the patients. We need to support caregivers as part of the multidisciplinary care package.
LaFaver: Absolutely. Every patient comes in with a context. Recognizing that caregivers might struggle with their own depression is a very important issue that we need to pay more attention to.
Switching gears a little bit, what would you say was the most exciting therapeutic update in the realm of Parkinson's therapies?
Subramanian: There's some interesting abstracts, for sure. One that caught my eye was on the topic of camptocormia.
Camptocormia is the bent spine that some patients with Parkinson's disease experience.
Helping patients with Parkinson's disease with a bent spine, but who are otherwise moving well, is often a conundrum. We've tried all kinds of interventions, and I've taken a personal interest because some of my patients have been really disabled by this. It's often cosmetically very awkward for an otherwise well-moving patient to be so bent over and just feel like they don't want to be out in public because of the stigma of looking very obviously disabled and different. This new study provides data on a number of potential therapies.
LaFaver: Basically, it was a retrospective study comparing different approaches to camptocormia. They compared treatment with dopamine replacement therapy, physical therapy, steroids, deep-brain stimulation of the subthalamic nucleus or globus pallidus interna, and spinal fixation surgery. As I sometimes say, there's often 10 treatment approaches for particular disease, and there's not a single best solution for everyone.
That was ultimately also the finding here — that, unfortunately, the outcomes for camptocormia and Parkinson's were highly variable and unpredictable. Further research is desperately needed to improve the outcomes of these patients.
We're not going to have time to delve too much into the into the data. But this was basically retrospective analysis of 19 consecutive patients with this problem in the context of parkinsonism. It highlights an important unmet need. This is often a complication of a bit more advanced Parkinson's, which can be quite stigmatizing. Hopefully, it gets some other folks interested to you to look at possibly novel approaches, combining these approaches, or finding ways to stratify patients toward what might be best for them.
Subramanian: Surgical fixation is something they mentioned, with a patient in whom they had to redo a surgery. Again, trying not to harm the patient and making sure that the things we're offering patients are beneficial is also part of this dialogue.
LaFaver: And maybe getting orthopedic surgeons involved and thinking outside of the box in a multidisciplinary way is a good point.
Thanks so much for watching this first part of our AAN highlights of new research into Parkinson's disease. And thank you, Indu, for speaking with me.
Subramanian: Thank you for having me, Kathrin. Always a pleasure to see you.
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Cite this: Kathrin LaFaver, Indu Subramanian. The Latest in Movement Disorder Research - Medscape - May 19, 2022.