In honor of Parkinson Disease Awareness Month, Hubert Fernandez, MD, director of the Center for Neurological Restoration at Cleveland Clinic, provided perspective on the advances in the care for the neurodegenerative disorder.
Parkinson disease is the fastest growing neurodegenerative disorder in the world. Yes, “the cure” has remained elusive, but we have improved, by leaps and bounds, on how we provide care for patients with Parkinson disease. The month of April is dedicated to caregivers and patients with Parkinson’s disease, allow me to share with you my reflections on the greatest changes in the way we care for our patients at Cleveland Clinic in the last decade.
Telemedicine saves the day
At Cleveland Clinic, we have been fortunate to do have been doing virtual visits a decade before any other institution. In fact, when we published our virtual visit 5-year experience at the Neurological Institute at Cleveland Clinic, even before the pandemic, we showed how we saved our patients over millions of miles of travel to receive their care. Of course, within one month, the entire world caught up and started offering virtual visits to their patients as well. I believe this is a great thing, and we, at Cleveland Clinic, are glad to know how this once ignored platform has now become a mainstream in Parkinson care. It goes without saying that this platform has its limitations, will continue to evolve, and it will require further research and innovations to make it more accessible to the most vulnerable of Parkinson populations who need it most.
With anything new, there are always “the traditionalists”, both clinicians and patients, who are not fans of this technology. They say “the human touch is lost”. I would argue that virtual visits are not meant to replace in-person visits, but it is an option to enhance the care of patients. It is a gift for patients no longer able to travel because of their disability; a chance for clinicians to take “a peak” into their patients’ true living conditions and how they interact with family and caregivers; an opportunity to include sons and daughters from out of town to join virtually and be on the same page with the plan of care. In fact, I believe we gain more insights on their genuine state, than we lose by not seeing them in person.
The clinical trial option is an integral part of Parkinson care
The primary reason as to why I chose to specialize and devote my entire clinical and academic career in Parkinson disease and Movement Disorders was the opportunity to change lives and advance care through research and clinical trials. In our busy world, with lots of demands from clinicians and expectations from patients, it is tempting to go for the quick fix and simply offer what is commercially available. But if every clinician did just that, how can we then advance care for patients with Parkinson disease? How and when do we find the cure? Therefore, I committed myself to doing everything in my power to help create an infrastructure that seamlessly incorporates clinical research and trials into the daily care of our patients. At Cleveland Clinic we are able to offer opportunities to engage in research in every stage of their Parkinson journey—from the newly diagnosed to the most advanced stages. We are now able to offer disease-modifying therapies that may slow disease progression and symptomatic therapies to improve their current motor and non-motor symptoms, especially advanced therapies who are most disabled with the disease. And for those who are, understandably, still hesitant to participate in a clinical trial, we offer observational and genetic studies to better understand disease mechanism. I must say that most of them eventually gain our trust, get invigorated in their contributions to positive change, and often go for more and decide to participate in a clinical trial.
There is nothing that brings me more joy than the opportunity to provide hope to our patients, and I am joined by a whole team of world-class clinicians, clinical research coordinators and translational researchers who share the same values. How much more fortunate can I be?For patients who are considering participating in clinical trials but just need the final push for them to join in the mission, I usually say, “The very reason why I am able to offer you the best treatments for Parkinson disease today is because just a few years ago, someone who was in your same shoes volunteered to participate in a clinical trial. And the main reason why your neighbor, children and your children’s children will no longer suffer from the same illness you have, is because today you decided to participate in a clinical trial."
Taking advantage of technology to improve care
One of the greatest challenges in Parkinson disease is that it is not simply a shaking disorder. It is much deeper than that. Parkinson disease affects how people move, think, speak, and feel.In fact, nearly every organ system, from skin to bones, is affected by Parkinson disease.To make it even more complicated, each person’s burden is different from another. There is not one patient who suffers exactly the same way—some are visibly more motorically-affected, while others are suffer in silence. And the treatment is not one-size-fits-all. How then, in the limited amount of time we are able to spend with each patient, can we probe on all these motor and non-motor complications and explain their options? How then can we reach patients from the farmlands of our nation with limited resources to provide them the same care to that of a patient living in Cleveland? The answer is technology. Technology allows us to probe into many affected organ systems in the most efficient and comprehensive manner; it allows us to track a constellation of symptoms, some of which are improving, while others are worsening. At Cleveland Clinic, when a patient sees us, they often come 30 to 60 minutes before their face-to-face appointment with their clinician. They are first taken into "the waiting room of the future," where they answer some questions about their symptoms, jot down what they want clinicians to focus on, then they perform some iPAD-based cognitive and motor testing, then finally they undergo a gait assessment before being brought to the exam room. These data are all directly incorporated into their electronic medical record so that as clinicians enter their rooms, they already has a panoramic view of the patients’ motor, cognitive and behavioral state, which then allows them to address problems that otherwise would have never been brought up, while still having time to focus on the problem that patients want addressed. In my opinion, man is not better than machine, nor is machine ever better than man. It is man who provides the brain and the heart, and machine that extends and multiplies man’s arms and hands.
It takes a village to provide world-class care: the rise of patient-centered interdisciplinary programs
There is not one illness I can think of that yells the word "interdisciplinary!” and forces us to constantly reinvent how patients are optimally treated than Parkinson disease. Care has certainly evolved: from the PCP caring for the patient with the neurologist as a consultant; to the neurologist primarily caring for the Parkinson patient;to multidisciplinary care where the neurologist acts as a quarterback, sending the patient to various specialists, as needed; and finally, to patient-centered interdisciplinary care. Here, the patient sits at the center while the neurologist, psychiatrist, neurosurgeon, clinical psychologist, physical, occupational and speech therapist revolve around and collaborate for the care of the patient. This is how we do it a Cleveland Clinic, and Parkinson Centers of Excellence, and in some larger academic centers. However,as we learn more about Parkinson disease, we realize that more and more disciplines are needed: nutritionists, exercise physiologists, sex therapists, dance, art and music instructors, kick boxers, tai chi instructors, sleep specialists, marriage counselors, social workers, palliative care specialists, etc. The more integrated these disciplines are for the patient, the higher the likelihood of that patient thriving, living a longer and more fulfilled life. We are fortunate at Cleveland Clinic that we do not have to fight our leaders for this model of care. Our founding principles of “patient first” and “to act as a unit” are at the very core of these requirements to deliver the best care for our patients with Parkinson disease. It is by no means a perfect system, yet. We are determined to keep tweaking this model so that we can serve as many patients without prejudice to their gender, socio-economic status, and most especially their geographic location. Patient-centered interdisciplinary care should not be for northeast Ohioans alone. However, we do realize that we cannot touch every Parkinson patient. There are too many of them, and there are too few of us, yes, even with machines, a burning desire, and a proactive mindset. The next evolution of care is to somehow transition this patient-centered interdisciplinary model to population medicine. And we are excited to embark on this next challenge.