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August 5, 2020/Behavioral Health

Virtual Shared Appointments Are a Boon for Managing Functional Movement Disorders

Novel online gatherings boost patient education and engagement

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Functional movement disorders (FMDs) are difficult to treat and can be isolating for patients because of their negative impact on activities of daily life. Now, patients with FMDs who are seen at Cleveland Clinic’s interdisciplinary FMD clinic have a new way to connect with their clinicians and other individuals with the condition.

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Virtual shared medical appointments (VSMAs) for FMDs are bringing together patients twice a month for clinical assessment and education. Led by a neurologist and a nurse, the 90-minute sessions are conducted online using Cleveland Clinic’s MyChart Zoom application. According to both the clinicians and the 10 patients who have participated, the three VSMAs held so far have been a success and led to unforeseen benefits.

“The VSMAs allow us to provide patients with much more education than we can with individual visits,” says Taylor Rush, PhD, a clinical health psychologist in Cleveland Clinic’s Center for Neurological Restoration. “What has also been powerful is having patients see and hear other people with FMDs, which doesn’t often happen in real life. Patients at one session asked to exchange contact information so they can keep in touch.”

New support for a marginalized patient population

FMDs are commonly encountered in the movement disorder clinic, and treatment often requires interdisciplinary care. The most common FMD syndromes are functional tremor, functional dystonia, functional gait, functional myoclonus and functional parkinsonism. The movements seen in patients with FMDs are not explained by neurologic disease and often can be significantly improved with distraction or nonphysiologic maneuvers.

“These patients often feel marginalized and isolated because of difficulty finding the right care,” says Xin Xin Yu, MD, a staff neurologist in the Center for Neurological Restoration and co-director of the FMD clinic. “The VSMAs give them an opportunity to voice their concerns as a collective group and talk about how to advocate for themselves within the healthcare system.”

How the VSMAs work

Dr. Yu leads the VSMAs with clinical nurse coordinator Lyndsey Sandy, RN, BSN. The 90-minute sessions start with introductions, which are followed by a brief virtual focused neurological examination of each patient by Dr. Yu, education, interactive discussion and follow-up planning. Prior to the first session, patients are provided with information about how to access MyChart Zoom, given rules for participating and encouraged to find a quiet space from which to dial in. Each patient is allowed to bring one loved one to the sessions, for support and to ask questions.

“The whole family is affected when a person has a functional movement disorder,” says Dr. Yu. “Having a family member participate in the VSMAs and learn can help reduce the caregiver burden.”

The key ground rules for VSMA participants are maintaining confidentiality within the group, respecting each other and understanding that each individual’s experience of FMD is unique. Patients also have to understand that, unlike in a traditional medical appointment, they are sharing “air time” with others.

“We give each patient 5 to 10 minutes to talk about their history and ask questions, but the entire VSMA can’t be about just them,” says Dr. Rush. “If an individual has a lot of questions, we may have to set up a follow-up appointment.”

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The main challenges in offering the VSMAs, according to all the clinicians involved, are related to the learning curve associated with the MyChart Zoom technology.

“It’s very time-intensive on the front end to ensure that patients have the right software installed, pop-up blockers off and their audio working,” says Dr. Rush. “Sometimes it takes a bit of coaching on how to do that at home.” For real-time assistance, an administrator who coordinates SMAs for the Center for Neurological Restoration is available to patients by mobile phone.

Building on decades of SMA experience

Indeed, the FMD clinic has enjoyed ample support in initiating its VSMAs via Cleveland Clinic’s overall SMA program. Started in 1999, the program now facilitates more than 200 types of SMAs. The VSMAs are a new offering, spurred in part by the COVID-19 pandemic. And the ones for FMDs appear to be distinctive at the national level.

“We have patients with FMDs who come from out of state for care, so we had been thinking about using the VSMA platform to improve access for them,” says Dr. Yu. “The pandemic really served as a catalyst for getting this implemented. As far as we can tell, no other institutions are offering VSMAs for FMDs.”

Support groups for patients with FMDs also are lacking, which may help explain why the waiting list for the VSMAs is long, according to Dr. Rush. Given the level of interest, the FMD clinic is looking at expanding to a recurring support group focusing on different topics and offering drop-in sessions.

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