"The Buzz" - Hot Topics in Movement Disorders - PMD Alliance

Telemedicine. Social prescribing. Health equity & access. These were the hot topics buzzing around the most recent Pan American Congress in Parkinson’s Disease & Movement Disorders that I attended in Miami, FL. I’m a neurologist who has specialized in Parkinson’s and movement disorders for decades, working with patients and industry. I have the experience to know: these hot topics are more than fads; they represent the next wave of care and thought leadership in the field. These topics, sometimes controversial, invite powerful shifts that can positively alter wellbeing for everyone living or loving someone with the disease.

Telemedicine in Parkinson’s Disease (“You’re on mute, again!”)

When the pandemic shuttered doors, even to the clinics we rely on, for most, the only option to obtain care became telemedicine, an online live videoconference between individuals and their healthcare providers. At the Miami congress, Dr. Christopher Goetz, MD, from Rush University Medical Center, presented work conducted with his colleagues and people with Parkinson’s about the rise and fall of telemedicine before, during, and after the pandemic.

Dr. Goetz’s research showed that, at the start of 2020, video telemedicine made up a mere 1% of appointments, but by April 2020, in the shock of the early pandemic, telemedicine suddenly skyrocketed to over 60% of Parkinson’s appointments. Though telemedicine is often considered more convenient, curiously, these spikes didn’t last. As COVID lingered but a desire to reemerge from our bubbles heightened, in-person visits began to rise, dramatically see-sawing the balance between telemedicine and in-clinic appointments. By April 2021, in-clinic appointments were nearly back to pre-pandemic levels of over 90%, even though use of telemedicine was still an option.

Why were so many people with Parkinson’s flocking back to this busy Parkinson’s clinic based in a large metropolitan area? Dr. Goetz and his colleagues asked their patients, and received interesting responses. One individual said, “I really felt like I needed to be examined,“ which suggests that people may be more confident in their healthcare and treatment plans when seen in-person. This aligns with Dr. Goetz’s own perspective as he finds that he gains a more total, holistic view of the individual’s physical, mental, emotional, and social circumstances when in-clinic. He says that a full, reliable examination cannot be conducted over video. Plus, he believes that there’s something comforting and safe about chatting in person: “There are certain topics which are not easily brought up or discussed in full over video and it’s so important to pick-up non-verbal signals and have the care partner present and engaged during the clinic visit.” In fact, Dr. Goetz added, “Any problems or fears, patients know it’s going to be addressed in the doctor’s office. They don’t have to carry those burdens alone; they know it can be on the doctor’s shoulders.”

Perhaps the truth is that we are social beings who long to connect. Another individual returning for an in-person appointment said, “I have been so isolated, it’s good to get out.” One patient put it best when they explained, simply, their reason for returning: “I missed my doctor.”

“Patients love telehealth—physicians are not so sure.” -McKinsey headline, February 2022

Ray Dorsey, MD, the co-author of the book Ending Parkinson’s Disease, has a different take. He smiled while quoting the McKinsey headline in response to his live, on-stage debate at the Miami conference with Dr. Anthony Lang, from Toronto Western Hospital Research Institute, on the sustainability and access-expanding power of telemedicine. He indicates that, in almost every telemedicine study, patients love telehealth.

There’s value in an in-clinic visit. “It’s true,” he said, “a telemedicine exam is not as good; there are things I miss.” And telemedicine still has a much-needed place in the future of healthcare when it comes to ensuring everyone has the care they need. Dr. Dorsey makes a point of highlighting patients who live in rural areas without access to the care they need—how do they see a neurologist or movement disorders specialist? Or what about those who can’t leave their homes to see a provider because of their Parkinson’s or other medical conditions?

Dr. Dorsey cites research that shows only 18% of Parkinson’s patients in the U.S. actually get care at Centers of Excellence. What about the remaining 82%? In fact, research by Allison Willis, MD, at University of Pennsylvania School of Medicine, indicates that 42% of Medicare beneficiaries—people with health insurance—don’t see a neurologist of any kind within the first 4 years of diagnosis because of lack of access. For these individuals, telemedicine could revolutionize their care and wellbeing.

Dr. Dorsey believes that beyond expanding access to care, which is critical, telemedicine offers other benefits. Seeing a patient in-clinic, when they literally and metaphorically get buttoned up to see their healthcare provider, gives clinicians an “artificial snapshot…You miss how people are feeling and functioning in their natural environment,” an experience Dr. Dorsey gets from video telehealth appointments where he sees individuals in their homes.

If we want to support and care for all people living with Parkinson’s, no matter their geographical location, physical mobility, or cognition, bringing care to patients (rather than patients to care), he says, is the way forward

At PMD Alliance, we’re committed to expanding access to care through our newly launched educational, livestreaming Rural Reach programs and our Spanish-language Saber es Vivir programs, designed to bring resources to Hispanic families.

Health Disparities: Unequal Access to Support Groups

“Doctors who know the disease but don’t experience it can provide insight to an extent, but people who actually go through it can provide a whole new level of understanding.” -Ece Bayram, MD, PhD

Ece Bayram, MD, PhD, and Irene Litvan, MD, FAAN, FANA, from the University of California San Diego, know that the social interactions provided by support groups are crucial. In a support group, we feel nourished and validated by those who know what it’s like to walk in our shoes. We get opportunities to listen to our peers’ firsthand tips for navigating the journey, and we cultivate meaning by sharing our own experiences and advice.

The problem, though, is that not everyone has access to support groups in their community and, if they do, they may not even know groups exist. In a recent study conducted by Drs. Litvan and Bayram using Parkinson’s Foundation data, they discovered that there’s a noticeable gap in support group participation between Whites and Hispanics. Research shows that only 7% of Hispanics surveyed attend a support group, compared to more than double–19%–of White non-Hispanics.

For Dr. Bayram, what’s striking is not only the disparity, but the underlying cause: “In asking people with Parkinson’s whether they participate in a support group, the number of people who even answered the question dropped significantly for Blacks and Hispanics. Which makes me wonder: do people not know what support groups are?”

What’s concerning, she explained, is that those surveyed are people who already obtain care from a Parkinson’s Center of Excellence: “They already have access,” she said. “I don’t think we’re capturing how things are so much worse in the community.”

Even for those who do get care, Dr. Bayram wonders if there’s something else contributing to the disparity. Due to a history of discrimination that has fueled distrust, “people in the Hispanic community often already hold a potential bias against healthcare. If providers are not offering the support group resource properly, patients won’t trust them. The job to educate patients falls on the clinician, who must be consistent about recommending resources because support groups can really help.”

Despite the barriers, Dr. Litvan believes that building these groups in the Hispanic community is possible. “It’s going to be hard work. But I think that we have to start somewhere. We’ve seen very small groups crop up. In fact, we have a patient who’s been very successful. He developed nine support groups with 15-30 people each. He was the one who said we have to start here, in the Hispanic community.”

The only road to change is to begin, right where you are.

During the pandemic, we lost nearly 30% of all support groups. We need volunteers to step up and lead more than ever. Join us at our inaugural ALL IN!™ Summit for prospective & practicing Community & Support Group Leaders, October 22-25, in Washington, DC.

Loneliness & Social Prescribing: “Everybody’s lonely because of the pandemic, right?”

“It’s a new way of thinking,” Indu Subramanian, MD, the host of PMD Alliance’s wHolistic!™ series, insists about clinicians who are considering the impact of loneliness on their patients’ health. Dr. Subramanian is at the forefront of the move toward social prescribing, which is a shift away from conventional medical treatments only toward a whole-person, mind-body approach. To Dr. Subramanian, this means healthcare professionals recognizing the real effects of social isolation and loneliness on people with Parkinson’s and “prescribing” (or referring) the person to engage in the social activities that excite them. This can include everything from exercise programs to common interest clubs and online groups, hobbies, religious and spiritual groups, volunteering, and support groups.

Social prescribing is not some new age theory; research by Dr. Subramanian and her colleagues shows that social isolation and loneliness in people with Parkinson’s are associated with greater symptom severity and a lower quality of life. Feeling isolated and disconnected has real health impacts.

Dr. Subramanian believes that the COVID pandemic, which forced all of us into social isolation, has “driven more openness in talking about loneliness,” a topic that was previously taboo. And she insists it’s incumbent upon her neurologist colleagues not to abandon medications and devices, of course, but to add social activity to their prescriptions. “We’re hungry for this,” she said of her colleagues. They’re ready to embrace a new model of care.

In offering social prescriptions, Dr. Subramanian urges her colleagues to be inclusive and meet their patients where they are: in her work, she’s realized that not every patient has the luxury and privilege of being able to go to a gym or drive a distance to exercise classes or places that are “PD certified.” “We, as their providers, need to get a feel for what adversity they’re facing” and try to offer local, culturally-relevant, accessible solutions.

This message is not limited to people living with chronic disease: care partners need social interaction and support, too. “It’s like the oxygen mask analogy,” she told me, referring to the announcement flight attendants make prior to take-off reminding us to put on our own mask first before assisting others. Social connection has the power to relieve burnout and boost wellbeing for us all: care partners, healthcare professionals, researchers, support group leaders, and advocates.

Take care of yourself. Everyone wins when you do.

Go Deeper: PMD Alliance, alongside lead authors Neal Hermanowicz, MD, and Maria Cristina Ospina, MD, published a paper about loneliness titled, “Impact of Isolation During the COVID-19 Pandemic on the Patient Burden of Parkinson’s Disease: A PMD Alliance Survey.”

The full audio version of this article–narrated by author Jean Hubble, MD–is available now. Click here to listen.

One Comment

  • Patricia says:

    You appear to have a lot available for you. We recently moved to Peterborough ont and cannot find anything at all let alone a support group for my husband. It would be good for him to meet others facing the same issues.

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