Enthusiasm for this PCORI-funded study was high. After the research team targeted specific counties and used a wide variety of online outreach efforts, 11,734 individuals visited the study’s website , and 927 expressed interest in participating in the study. Ultimately, Dorsey’s team enrolled 195 patients and 111 of their caregivers.
However, according to the team’s published interim findings, many of the patients enrolled were already seeing a Parkinson's disease specialist. This result illustrates the difficulty in reaching the patients who most need help accessing specialists, Dorsey says. Enrollment in this study likely reflected the “digital divide,” he adds, in which social and geographic factors separate those with and without access to the internet.
Who Joined the Study?
The interim findings, published in July 2016 in the journal Telemedicine and e-Health, show that the mean age of the participants was 66, and, on average, they had been living with Parkinson's disease for eight years. Many—73 percent—had already been under the care of a Parkinson's disease specialist. (Nationally, on average, 58 percent of people with Parkinson's disease see such a specialist.)
Among the study participants who were seeing Parkinson's disease specialists, most were paying a high price in travel. They were averaging 19 miles each way for their care. “Caregivers often find that, factoring in driving and wait times, a 15-minute doctor’s appointment turns into two hours,” notes Dorsey. “And for the patients, having to travel to urban centers that require mobility is a worst-case scenario.”
Other interim findings were that most of the study participants tended to be white, college educated, and more technologically savvy than the general US population. The study team had not reached many of the patients who didn’t have access to in-person specialty care and so would most benefit from telehealth. This problem most likely reflects those patients’ limited access to the internet, Dorsey says, since the study’s recruiting was done primarily online.
To get beyond this barrier, Dorsey says that his team needs to go to where those patients are: “We should be traveling to satellite clinics in remote rural areas to find patients in need of services and who are not sufficiently familiar with technology.”
The study provided technical support to the participants. It sent a web camera to those who didn’t have one. After the patients received an email link to secure, HIPAA-compliant video conferencing software, staff at the coordinating center performed test connections, helping patients with the software when necessary.
Caregivers often find that, factoring in driving and wait times, a 15-minute doctor’s appointment turns into two hours. And for the patients, having to travel to urban centers that require mobility is a worst-case scenario.
Dorsey’s team is completing analysis of the current study’s data, including how telehealth affected participants’ well-being. He anticipates publishing the final results in early 2017. He would like to refine the team’s outreach and provide more educational content on the study website.
Dorsey is also considering variations on his approach to telehealth. While the current study pairs one remote specialist with one patient for four visits, he wonders whether a team of specialists would better serve these patients. For example, some patients could benefit from speech therapy, which studies have shown can be delivered over the internet.
With a new PCORI award, Dorsey’s team will add telehealth care for conditions that often accompany Parkinson’s disease, such as anxiety, depression, and dementia. The team is expanding the program to provide care via the new statewide Parkinson’s Disease Care New York program, which offers free remote care to more than 500 people. Their PCORI award will also evaluate this telehealth initiative.
Taking an even wider view, Dorsey says, “We view Parkinson's disease as a test case. We would like to see our approach to telehealth applied to other conditions, with other researchers enhancing it and taking it in other bold directions.” He adds, “Telehealth is looking more and more like it’s the best way to provide convenient, patient-centered care.”
ORIGINAL FEATURE (AUGUST 2014)
For Mark Matulaitis, who lives on the remote eastern shore of Maryland, getting to Baltimore to see a specialist for his Parkinson's disease was an all-day adventure. “My wife would miss an entire day of work to get me there,” says Matulaitis, a 59-year-old retired sales manager. “It was a journey. Compared to the Eastern Shore, Baltimore is a different world. You can get lost easily.”
People with Parkinson's disease, of whom there are 500,000 in the United States, fare better when they receive care from a neurologist. But many have trouble accessing it. Less than 60 percent of Medicare beneficiaries with Parkinson's disease see a neurologist, even though those who don’t are 20 percent more likely to die, injure themselves in a fall, or enter a nursing home.
Three Ds Hinder Patient Access to Expert Care
E. Ray Dorsey, MD, MBA, who is a neurologist at the University of Rochester, thinks the problem is caused by “the three Ds: Distance, Distribution of doctors, and Disability.” Many patients must travel great distances to keep routine appointments because doctors who specialize in Parkinson's disease tend to work at academic medical centers located only in major urban areas. However, many Parkinson's disease patients find travel a burden because they tend to be elderly and the disease itself reduces mobility.
Dorsey is leading a study to examine the feasibility of using telemedicine to counter those “Ds” by delivering expert care to Parkinson's disease patients in their own homes. Telemedicine is two-way, real-time communication between a patient and a physician or other practitioner at a distant site. If implemented widely, the practice could make specialized care available to many more patients.
Dorsey became interested in telemedicine in 2007 when he was approached by a nursing home in the remote community of New Hartford, New York, about 130 miles east of his practice in Rochester. “They had about 50 residents with Parkinson's disease, and no one who could see them,” Dorsey explains. “They asked whether my colleague and I would see them remotely. We said, ‘Sure.’”
The request led to a pilot study that included patients from the nursing home and some other New Hartford residents. The participants used simple videoconferencing software, akin to Skype. During the video appointments, doctors asked patients how they’d been since their last visit. The doctors checked dexterity, shake, and gait by having patients tap their fingers, hold out their hands, and rise from their chairs and walk. They also addressed such concerns as depression, constipation, and skin problems.
The results were promising. The patients kept nearly all of their appointments, and they showed improved quality-of-life and range-of-movement scores compared with patients who continued with their usual care.
Patients also raved about the convenience and quality of their telemedicine appointments. “Our first patient said it was great,” says Dorsey. “He said it was like Dick Tracy”—the comic-strip private eye who famously used a 2-way wrist TV to communicate with headquarters.
Our first patient said [the convenience and quality of telemedicine appointments] was great. He said it was like Dick Tracy.
Is Telemedicine Feasible Nationwide?
Now, with funding from PCORI, Dorsey and five co-investigators are launching a nationwide randomized controlled study. It aims to test, on a larger scale, whether treating Parkinson's disease patients with telemedicine in their homes is feasible, reduces travel time and caregiver burden, improves quality of care and quality of life, and is preferred by patients.
The study will enroll about 200 patients, who will receive either their usual care or usual care plus telemedicine visits with a provider at one of 20 healthcare facilities selected for excellence in Parkinson's disease care. Telemedicine patients will have at least four sessions with a Parkinson's disease specialist and may be offered additional videoconferencing sessions, as needed, with other providers. After a year, the research team will compare patients who had and had not received telemedicine visits. Patients’ regular caregivers will also be invited to enroll in the study, and the researchers will look for any changes in their time and travel burden and strain they experience.
The researchers have put together a patient advisory board that includes three Parkinson's disease patients, one of whom has organized a 3,000-member “meta” support group; a caregiver who runs a Parkinson's disease support group in Delaware; and the director of research and development at a health-centered online social network. The board helped design the study and select outcomes to evaluate, which include patient-reported quality-of-life measures. The board members plan to offer their expertise about the Parkinson's disease community to inform recruitment efforts, and they will assist in evaluating study results and contribute to publications. The National Parkinson Foundation will also help recruit patients from its database, its network of support groups, and its network of Parkinson's disease healthcare providers.
One member of the project’s patient advisory board is Rich Simone, a 70-year-old semiconductor engineer who lives in Sunnyvale, California. After being diagnosed with Parkinson's disease in 2010, Simone became interested in the potential of the Internet to connect patients, conduct research, and deliver care.
"I think it will be a long time before doctors can do an annual physical on the Internet, but with Parkinson's disease, even in the office, the doctor is usually observing you from 5 or 6 feet away," he says. "Parkinson's disease is a great fit for telemedicine."
Coming from the business world, Simone applauds PCORI. "You have to go and hear the voice of the consumer before you build something," he says. "Every organization that deals with Parkinson's disease should have patient advocates.”
So far, Simone has been participating in weekly calls with the investigators.. He has helped design—and get translated into Spanish—a postcard to distribute to the doctors who will recruit patients. And he's made his services—as both a patient and a techie—available to doctors who want to participate. "Not all of the doctors are up to speed with the Internet, so I’ve volunteered to help them learn the software," says Simone. He recently spent an afternoon with a doctor troubleshooting various scenarios: What if the patient has a desktop computer with a camera that can't be moved easily? What if the patient has only a laptop?
I think it will be a long time before doctors can do an annual physical on the Internet, but with Parkinson's disease, even in the office, the doctor is usually observing you from 5 or 6 feet away. Parkinson's disease is a great fit for telemedicine.
A More Satisfying Interaction?
Telemedicine advocates note that the technology doesn’t just reduce travel; it can lead to a more satisfying interaction between doctor and patient. “We’ve found that patients actually feel more comfortable and provide more information when they’re seeing a clinician in the comfort of their own home,” says Dorsey. He adds that during the videoconference, physicians benefit from observing background details—from pets to potentially unsafe floor surfaces—that would not come to light during an office visit. Another benefit is the possibility of including family members who may be far away.
Matulaitis agrees that telemedicine is beneficial. “As soon as I go into a doctor’s office, my blood pressure goes up,” he says. “It’s much more relaxing at my house. I’m not exhausted by the whole process.” He notes that telemedicine has improved his health status. Dorsey corrected medication dosages that had been unsatisfactory for a year and convinced him to use his elliptical trainer.
Guy Wilcox, a 73-year-old physician who lives on a farm in New Hartford, has been receiving telemedicine appointments to treat his Parkinson's disease since joining Dorsey’s first pilot study. He is impressed by how intimate a virtual connection with a provider can feel.
When I see the doctor locally, there are lots of distractions. [But a telemedicine appointment offers] a more real, high-voltage relationship. It’s made me want to function at the highest level I can.
“When I see the doctor locally, there are lots of distractions,” Wilcox explains. By contrast, a telemedicine appointment offers, he says, “a more real, high-voltage relationship.” He adds, “It’s made me want to function at the highest level I can.”
However, a telemedicine session can’t accomplish everything that a face-to-face appointment can. When Dorsey sees patients remotely, for example, he can’t measure changes in the muscle tone. Nevertheless, he says, “Once someone’s had an in-person assessment, there’s no reason why follow-ups can’t be done remotely.”
In fact, one of his ambitions is that the study will provide a blueprint for how telemedicine might be used to manage other chronic conditions, like Alzheimer's disease and diabetes, which will contribute more and more to the total US disease burden in coming decades.
That might lead to more satisfied patients like Wilcox. It’s been five years since Wilcox began receiving remote care for his Parkinson's disease. “It’s gone so well,” he says, “that I haven’t considered doing anything else.”
Using Technology to Deliver Multidisciplinary Care to Individuals with Parkinson's Disease in Their Homes
Principal Investigator: E. Ray Dorsey, MD, MBA
Goal: Explore telemedicine as a means of providing expert care to Parkinson's disease patients who have difficulty accessing specialists in person.
Posted: August 25, 2014; Updated: March 28, 2017