Distance, disability, and distribution of doctors: all are barriers to Parkinson's disease care that telemedicine can help overcome, according to Ray Dorsey, MD, of the University of Rochester in New York.
"Over 40% of Medicare beneficiaries with Parkinson's disease do not see a neurologist of any kind within 4 years of diagnosis, leading to worse health outcomes," said Dorsey.
"In general, clinicians should be providing care to patients on their terms rather than relying on patients to see us on ours," he added. "Telemedicine allows neurologists and Parkinson's specialists to extend their reach and care for more individuals."
Long History of Telehealth
Long before the COVID-19 public health emergency, telemedicine was part of managing Parkinson's disease.
"The Parkinson's community has been engaged in promoting telemedicine for 10-plus years," said Ted Thompson, senior vice president of public policy for the Michael J. Fox Foundation for Parkinson's Research in New York City.
"One of the main reasons is there is a shortage of movement disorders specialists in this country," he explained. "Knowing that it's difficult to educate enough people to become movement disorders specialists and to disperse them appropriately geographically, telemedicine gives the promise of getting patients the specialty care they need to live their best lives with this disease."
"We've been using telehealth in the VA Parkinson's disease centers for nearly 10 years with great success," noted Jayne Wilkinson, MD, MSCE, of the Philadelphia VA Medical Center and medical director of the VA's national teleneurology program.
Studies show that Parkinson's patients are very satisfied with telemedicine, she noted. "While the technology at times has glitches, many patients report the benefits of not having to travel far outweigh these inconveniences," she said. Some patients use virtual visits on an ongoing basis, while others alternate in-person appointments with telehealth.
One advantage of virtual visits is that they let doctors see how patients function in their home, Wilkinson pointed out. "As they reference different functional limitations, we can see these directly. Patients with dementia and other cognitive impairments are often more comfortable at home, as well. Traveling to a new place can be difficult and create anxiety and distress."
Telemedicine can offer quick access when needed, she added. "We typically schedule telehealth visits, but they also can be set up on the spot," she said. "If a patient contacts us with a concern and we wish to see them briefly, we can transform the call into a video visit very easily."
Outside the VA, the 12-month randomized Connect.Parkinson trial showed that a virtual house call from a neurologist was just as effective as an in-office visit for maintaining quality of care in patients with Parkinson's disease.
To help neurologists implement telehealth services, the International Parkinson and Movement Disorder Society has created a step-by-step guide that reviews equipment and software, licensing and registration, insurance reimbursement, how to set up a video exam room, and how to conduct a telehealth visit. The guide includes resources, references, and information about clinical trials in telemedicine.
The society also has posted an educational webinar that addresses benefits and barriers to telemedicine, offers trouble-shooting tips, and reviews validated movement disorder scales for remote use.
Moving Telehealth Forward
During the public health emergency, CMS adopted temporary measures that greatly expanded telemedicine coverage to include home-based virtual visits. Over 9 million Medicare beneficiaries used telemedicine services in the early months of COVID-19.
But before the pandemic, "Medicare's near-absence of reimbursement was the major factor" limiting telehealth access, said Dorsey. Patients who lived in remote areas had to go to specially designated telemedicine clinics where an exam was performed, then viewed remotely by a specialist.
"In 2016, Medicare spent less than 0.1% of its budget on telehealth," Dorsey noted. "Visits in the home via telemedicine were not covered at all."
Whether Medicare will continue wide coverage after the public health emergency ends has yet to be decided. There appears to be broad bipartisan support for telehealth, but Congress will have to pass new legislation to make Medicare's changes permanent.
"We have been pushing legislatively for years to try and expand telemedicine," said Thompson. "While there's always a lot of support, the issue of money comes up: if more people can access care, isn't that going to cost more money?"
"The counter to that is that if they're accessing the right care, they're going to have a better treatment plan and probably fewer falls, hospitalizations, broken bones, and everything else."
Besides uncertainty about reimbursement, telehealth faces other barriers, Dorsey noted. "A digital divide prevents many with less education, in rural areas, and minorities from accessing the Internet," he said.
More than 41% of Medicare beneficiaries lacked access to a computer with high-speed Internet access at home, according to Eric Roberts, PhD, of the University of Pittsburgh. Nearly as many didn't have a smartphone with a wireless data plan, and one out of four didn't have either option. The proportion of Medicare beneficiaries with digital access was even lower among people who were 85 or older, widowed, had a high school education or less, were Black or Hispanic, received Medicaid, or had a disability.
"Whether this disparity in access to technology has led to a disparity in care remains to be seen," Roberts said. "We're still observing the effects of COVID and disruption in care patterns. But our study highlights a reason to be concerned that the rapid conversion of paid visits to telemedicine could widen disparities for certain populations."
In addition, 38% of older patients may have trouble with video telehealth visits because they're inexperienced with technology or have disabilities that interfere with it, noted Kenneth Lam, MD, of the University of California San Francisco. "I'm very concerned we are overlooking issues of virtual access for older adults," Lam said. "As long as clinics remain virtual, older people can't get in."
But for others, telehealth has opened new doors to care. An online survey conducted by the Michael J. Fox Foundation in April and May showed 39% of Parkinson's patients used telemedicine.
"We've heard from patients who have never been able to see a movement disorders specialist until this pandemic," said Thompson. "As a result, some of these patients got on the right medications, the right dosages, the right care plan for the first time, and their lives are better because of it."