Improving Access to Care in Parkinson Disease: Expanding Objective Diagnostics and Telemedicine

Amanda Hare, DNP

Parkinson disease (PD), once thought of solely as a movement disorder, is now recognized as a complex heterogeneous condition with a wide range of symptoms. These symptoms encompass both motor and non-motor aspects, such as bradykinesia, sleep disturbances, and cognitive impairment. Despite being the second-most common neurodegenerative disease in the US, many patients remain undiagnosed or misdiagnosed due to the variability of the disease.

Recently, an extensive study published in npj PD showed that in 2019 only 40% of PD Medicare beneficiaries visited a neurologist in the calendar year, with only 9% of patients seeing a movement disorders specialist. The study revealed that a majority of patients with PD failed to take advantage of recommended therapy services, like mental health or physical therapy, partly attributable to the lack of specialty care access and accurate diagnosis. These disheartening results highlight several glaring barriers within the PD care ecosystem.

To ensure favorable patient outcomes, the healthcare community must prioritize early and accurate diagnosis of PD and expand virtual care options. By doing so, individuals can receive timely access to the therapies they need, leading to improved quality of life and better disease management.

Why patients with PD are bounced around the healthcare system

PD is challenging to diagnose because many initial symptoms are vague. Patients may complain about trouble sleeping during the early stages of PD, so their primary care physician (PCP) will suggest melatonin or refer them to a sleep medicine specialist. Similarly, other early symptoms such as constipation and loss of smell are often dismissed or misdiagnosed by PCPs.

Cognitive problems may also be present, but many patients will disregard them, chalking up their forgetfulness or problems thinking to old age. Patients may also experience increased mood disorders but are often referred to a psychiatrist.

If a patient shows movement symptoms, like frozen shoulder, less dexterity, or toe rigidity, they will typically get bounced to a physical therapist, or orthopedic or podiatry doctor. In these cases, these specialists may misdiagnose the patient, who will eventually undergo surgery to fix their issues rather than being treated for PD. If a tremor is present, a patient’s family physician may diagnose them with essential tremor, a more common condition than PD.

Since PD affects many different systems in the body, PCPs often cannot diagnose PD in patients correctly. When referred to a specialist, it is rarely a neurologist or a movement disorders specialist. Ultimately, the patient continually gets bounced around the healthcare system, never being correctly diagnosed with PD or receiving the suitable therapies to alleviate their symptoms.

Standardizing protocols in the elderly population

Patients over 60 who present with these early symptoms of PD will first typically visit their primary care facility. In many cases, their symptoms are, in fact, attributable to conditions other than PD.

However, because PD is one of the leading neurological disorders, we need to help PCPs employ a standardized protocol for the elderly population. Suppose a patient is complaining about sleep disorders, anosmia, constipation, or changes in gait (which we know are all PD-associated symptoms). In that case, PCPs should flag patients as potentially having PD and push them in the right direction for care. Two procedures we can incorporate today into this PD standardized protocol are objective diagnostics testing and telemedicine in the field of neurology.

Expanding care to patients with PD

If patients are not able to visit a neurologist or movement disorders specialist due to demographics, then the first thing we can offer patients to improve care is an objective diagnostic test.

Surprisingly, a skin biopsy is one of the most reliable diagnostics for PD, able to detect abnormal deposits of ⍺-synuclein, a hallmark of PD. Compared to dopamine transporter (DAT) scans, this method can diagnose PD ten years sooner, meaning patients can undergo the appropriate treatment strategy earlier in the disease. Fortunately, a skin biopsy is a straightforward outpatient procedure done in a medical office without the need for patients to stop other medications. If we can push this forward and accurately diagnose patients early, we can ensure patients get the care they deserve.

Next, we can offer patients telemedicine options and have trained specialists to assist in diagnosing PD. We can break down borders by offering patients access to certified neurologists through online software or mobile apps to evaluate if an individual’s symptoms are attributable to PD or another condition. Rather than having to wait months for an in-office visit with a neurologist, patients can get care faster and from the comfort of their own homes. Since many health organizations already utilize telemedicine for dermatology and psychiatry, we can dramatically improve patient outcomes if we bring telemedicine to neurology and the movement disorders arena.

In the US, it has been reported that over 1 million individuals are living with PD. In all likelihood, this is a gross underestimate of the number of patients with PD in the nation because of misdiagnosis and lack of care access. To limit the barriers to care, we need to take drastic measures in pouring resources into standardizing protocols, specifically by providing objective diagnostics and virtual care options. By doing so, we can alleviate the suffering of many patients nationwide and, at the same time, significantly reduce the socioeconomic burden on our healthcare systems.

Author disclosure: Amanda Hare, DNP, is a medical science liason at Rune Labs.

StrivePD is a free iOS disease management application — FDA-cleared on the Apple Watch — that passively collects tremor and dyskinesia data via Apple’s Movement Disorder API. People with Parkinson’s (PwPD) can download the app and explore interactive charts to track their symptoms over time and understand how medications and physical activity impact them. Users will gain insights to guide their care journey and have the ability to share their data with clinical specialists for a personalized strategy. PwPD or caregivers can download the app on the Apple App Store today. For neurologists and movement disorder specialists, reach out to support@runelabs.io to understand your patients’ disease progression and gain insights into their quality of life beyond the clinic.