The chief scientific officer of the Parkinson’s Foundation and adjunct associate professor in the Department of Neuroscience and Physiology at New York University School of Medicine discussed the adoption of telemedicine in Parkinson disease care.
RECENTLY, THE PARKINSON’S FOUNDATION, in collaboration with the Movement Disorders Division of the Department of Neurology at Columbia University Vagelos College of Physicians and Surgeons and the New York-Presbyterian/Columbia University Irving Medical Center, conducted a survey that revealed disparities in telehealth use among people with Parkinson disease (PD) based on income and education levels.
As a whole, telehealth use for the 1342 surveyed patients increased from 9.7% prior to the coronavirus disease 2019 (COVID19) pandemic to 63.5% during it. Household income greater than $100,000 per year was associated with the highest usage of telehealth (odds ratio [OR], 1.54; 95% CI, 1.06-1.76); high usage was also strongly linked to postsecondary education (OR, 2.05; 95% CI, 1.16-3.62) and telehealth use prior to the pandemic (OR, 2.27; 95% CI, 1.34-3.85). The survey also revealed that more telehealth appointments were for doctor’s appointments (n = 777; 91.2%) rather than physical (n = 142; 16.7%), occupational, speech, or mental health therapies (n = 162; 19%). Although approximately half (n = 617; 46%) of all respondents reported that they would prefer to continue using telehealth always or sometimes after the pandemic ends, respondents who used telehealth for mental health services were less likely to prefer using it after the pandemic (OR, 0.31; 95% CI, 0.1-0.76), leading investigators to suggest that these services should be improved.
NeurologyLive® reached out to James Beck, PhD, chief scientific officer of the Parkinson’s Foundation and an adjunct associate professor in the Department of Neuroscience and Physiology, New York University School of Medicine, to learn more about the challenges that patients with PD face during the COVID-19 pandemic. He discussed how friends and family can help assist patients with PD in scheduling and attending telemedicine appointments.
One challenge is the fact that even though they are not more susceptible to developing COVID-19, they have a harder time recovering from COVID-19. PD symptoms include difficulty in swallowing and other issues, and just mobility as a whole, [and those] seem to make recovery a bit difficult. They’ve also had some challenges regarding their access to health care providers, access to their medications that they normally need to take, and even [access to] exercise programs—which are incredibly useful for improving overall symptoms. Also, COVID-19 allowed what is a very isolating disease to become more isolating, because of the social distancing restrictions.
That’s a really good question. In completing this study, we were among the first [researchers] to really get a measure of the use of telemedicine, both prior to COVID-19 and during the time of COVID-19, for people with PD. We saw a large increase in overall utilization of telehealth, but as you point out, there is apparent disparity between household income and usage of telemedicine.
Something we need to do as an organization—and we are working to do so—is increase knowledge about telemedicine and to provide support online to encourage people to utilize friends and family members to help them with telemedicine. Many people who live with PD are elderly. These are people with an average age of diagnosis in their mid-60s. A lot of these individuals may be more technically challenged than others, so having someone available— a care partner, a loved one, another family member, a friend—to help them with their telemedicine visit will be really important. As we’ve progressed during the course of the pandemic, I imagine more people are utilizing telemedicine than we anticipated. We ran this survey in the very early days of the pandemic, in spring 2020. I suspect the data have changed significantly since that initial survey.
It’s hard to say whether they’re not getting the care they need. I certainly hope they are getting the care they need. I think part of the problem has to do with the pragmatic, practical aspects of the different allied health professions and the services they provide. Speech therapy and occupational therapy, as well as physical therapy, often may need one-on-one, face-to-face engagements to really be most effective. That said, I know the field has incredibly talented providers and they’re thinking about ways in which to adapt a traditional face-to-face approach to the telemedicine approach.
I do know that sometimes reimbursement for these procedures via telemedicine is not always straightforward. It’s not something that’s supported by all third-party payers. So, to the extent that we are able to, as a nation, instill this goal of providing equal payment, whether someone has been seen in person vs via telemedicine, will be really important. Headway is definitely being made with the medical appointments, but I think we have some progress to be made with these allied health appointments as well. Insurance basically doesn’t pick up the tab at the same rate, and that can make it difficult both for providers as well as for the patients who utilize the services.
That’s a really good question. I don’t have an answer, and it’s worth following up on that in a subsequent survey of our population, which we have planned. I think what it could be is that, again, this disease can be socially isolating, and that is now impacted with the isolation from COVID-19 and not being able to have that rapport with a mental health professional. That kind of social support that could be there—in-person support— could be an aspect that may be missing.
Certainly, one reason why many people with PD said they preferred telehealth, or would be willing to participate in it moving forward, is just the sheer convenience of it. People with PD have problems with movement: It is a movement disorder. What we’re typically asking from a person with PD, someone who has difficulty moving, is to go to a major medical center or someplace in a city where access is not necessarily the easiest, and, [to boot,] it can be difficult to drive to. As a result, it can take hours to complete an appointment that you or I might be able to accomplish in much less time. So that sheer convenience— being able to have the telemedicine visit inside one’s home at a time that’s a bit more convenient for them—will be great. As telemedicine becomes really standardized across different platforms, I think it’ll be easier for everyone moving forward as well.
Something we need to do as an organization—and we are working to do so—is increase knowledge about telemedicine and to provide support online to encourage people to utilize friends and family members to help them with telemedicine.— JAMES BECK, PHD
It’s difficult to prescribe or monitor social interactions. What I think social interactions do is help broaden one’s environment. They can do many things to increase the affective nature of a person to increase their mood and increase other aspects of their life, maybe even reducing apathy. That can be brought about by social interaction. To the extent providers should be monitoring social interaction, it’s probably best to be asking whether providers can be monitoring the mental health of their patients, perhaps even doing short screens to determine whether their patients are suffering from depression, or aspects of depression or anxiety.
People with PD suffer a tremendously high level of depression compared with the general population. It seems to be organic to PD, and yet it’s eminently treatable. We have discovered is that it may not be screened at the level that would be we would like. Many people come into their clinic visits with a list of problems, and mental health is usually not a top priority. Clinicians are in a tough situation, because they have a limited amount of time and really want to address the concerns that [they can see] right in front of them. These [concerns] may be either highlighted by observing their patient or have been raised by their patient to address, and so they often don’t have that time or the luxury to really be able to query further ways to be able to help their patients in these particular situations.
Certainly, the telemedicine utilization was really interesting, and how that increased. The disparities were not terribly surprising, but I think [they] just provide a fine point on what we can do as an organization and as a society to really ensure that people have equal access to care.
Something we have seen anecdotally, through some other studies that we’re engaged with that involve telemedicine, is that the research aspect of telemedicine has been really great at providing an opportunity to offer an egalitarian approach to clinical research. Part and parcel of clinical care, as we’ve discussed in this COVID-19 survey, is the clinical research access that many people with PD, and many people living with diseases in general, would appreciate. We have seen that even though we may have limited physical sites that are able to have in-person recruitment, the minute we open it up to telemedicine, we’ve been able to see a large increase in interest and in the ability of people with PD throughout the country to be able to participate. I think it could be really important to think about that, and how it can be facilitated.
Another thing we’ve seen is that people with PD, as I mentioned, have this sense of isolation and depression and anxiety. To help combat that, the foundation has created a PD health-at-home series. This is a weekly series, several days a week, providing programming to people with PD around mental health, around exercise, as well as detailed educational support for the issues that are current and are important for persons with PD. This general wellness programming is available in English and in Spanish, trying to reach the broadest communities possible, and we’ve found these things have been really helpful in combating many of the complications our community has faced in dealing with the COVID-19 pandemic.
One of the most important endeavors we have underway is our large PD GENEration study, designed to offer genetic testing and counseling to 15,000 people with PD. Our goal is to improve the care of people with PD by offering genetic testing, and we think it’s going to improve care by not only empowering people to learn more about their disease, and whether they have a genetic form of PD—recognizing that it’s only about 10% to 15% of people who will have a genetic mutation leading to their PD. We’re on the cusp of a precision medicine initiative within the PD field. Several large pharma companies have targeted therapies to individuals who may have a certain genetic mutation, but we’re not ready yet. Our goal is to be able to screen as many people with PD as possible so that they potentially could participate in these upcoming clinical trials, which could lead to better care for these individuals, ultimately, if any of these experimental therapies become approved by the FDA.
Right now, for a person with PD, if you do offer genetic testing and identify a genetic form of PD, it doesn’t yet inform clinical practice. We do our genetic testing in partnership with the clinicians so that they can be aware of their own patients within their practice who might have a genetic form of PD. Neurologists are smart individuals. They’re constantly looking to make connections and are very observant, so the more people we’re able to make aware of genetics and PD and clinical outcomes, I think the better off we’ll be as a community to make new discoveries that we hadn’t appreciated before about clinical outcomes, being able to, again, empower people with PD. The third thing, of course, is the pragmatic goal of trying to speed up clinical trials for targeted therapies for people with PD.