The Importance of Patient-Centered Care in Parkinson Disease

Indu Subramanian, MD

Data presented at the 2020 MDS Virtual Congress, September 12–16, 2020, included findings from a survey conducted by Indu Subramanian, MD, and colleagues that shed light on the impact of loneliness as a predictor of disease severity in patients with Parkinson disease.

All told, the data identified that being lonely or socially isolated can be extraordinarily detrimental for patients and their well-being. Subramanian, who is the director of the VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers and a member of the faculty at UCLA, noted that patients with reports of feeling lonely had higher PRO-PD scores, even more so than those who smoked and had high stress levels.

To learn more about the importance of patient-focused measures, especially amid the ongoing global pandemic, NeurologyLive spoke with Subramanian in an interview.

NeurologyLive: What were the main takeaways from this survey?

Indu Subramanian, MD: We have this way of measuring quality of life called the PRO-PD scale. Laurie Mischley, ND, PhD, who's a collaborator of mine, looked at the scale and it seems to be validated against our normal measures of quality of life. It's quite a patient-centered quality of life scale, actually, because it includes a number of things that the NIH had wanted to be included in patient-centered outcomes. So much of the research that we do and spend a lot of time talking about is actually completely not patient-centered.

What we showed is actually something like tremor, which is like the most obvious Parkinson disease symptom, and when you think about a patient with Parkinson, you think about someone who is maybe stooped over with a tremor. That actually doesn't have much to do with quality of life. But if you have a lot of friends, it can actually improve your quality of life significantly. And if you don't have any real relationships, it can actually be very, very bad for your quality of life. It really impacts a lot of the nonmotor issues that we talk about with Parkinson patients. Things like depression and anxiety, insomnia, apathy, those things are actually tremendously impacted by this issue of being socially isolated. That can be very powerful for a patient with Parkinson. That really can determine how they're doing on a day-to-day basis much more than anything we measure in a clinic with a physical exam or some of the scoring that we do traditionally.

How important is it to have a more patient-centered approach to care?

I think it's quite important to care about what patients care about and be more patient-centered. I think that not only do we identify this with our survey, but we also have come up with possible solutions to help it, which is exciting because so much of what we're talking about with COVID-19 is this doom and gloom, and I kind of frame it in the framework of the fact that Parkinson in and of itself is a pandemic. There's been a doubling of Parkinson patient cases in the last 40 years or so, and they say that by 2040, it will double again. We have a huge number of an expanding population of patients, and we haven't fully figured out why that is. Then, we have this loneliness pandemic, which honestly affects every person on the planet, it doesn't matter who you are, if you're rich or poor, or whatever. I mean, that is a pandemic that has kind of been a silent killer in some ways, and then we have this third pandemic that's influencing these other 2—the COVID-19 pandemic—which is really limiting our ability to see our patients and make dramatic changes with their pills, and we're just trying to keep our patients safe.

What are those interventions that can help?

We have some powerful possibilities to intervene. What we were titling social prescribing, which is a concept that has been established out there, but it's not very well known about. This is a concept of literally prescribing a social intervention or social connection to our patients. So. I can say, “Mr. Smith, I know that you're lonely and you don't have anyone who cares about you.”

We have this actually new VA intervention, where there were a number of volunteers that used to come physically into the VA—anyone's ever been to the VA, you probably have been greeted by a volunteer in the lobby—and those folks are being told to stay home to keep them safe. Some of them are family members of veterans, or the widows of veterans, and that's their identity, helping other veterans. And now we've told them to stay put in their homes for the last 6 months. There's this new intervention called the Compassionate Contact Corps, and they're matching these volunteers with veterans through a survey, seeing if they were in the same branch of the military, what their favorite movie is, their favorite hobbies, et cetera, and connecting people, hopefully with like interests. Then, these volunteers will actually be either doing a digital sort of meeting, if they can get our patients to participate with that type of technology.

We're also actually proactively calling people on the phone, which is really exciting. Just a simple phone call can actually make a huge amount of difference for somebody. There's actually been some data on the benefits for the volunteers as well, which is pretty exciting. So we’re actually helping with designing a few questions to put into that survey and seeing if that changes as people are working with each other and helping each other out. I'm quite excited because veterans who get lonely are actually at much higher risk of depression and anxiety. Suicide actually is really high in this population and then also so is substance abuse. We really have to be careful with these populations and be proactive and make sure that we're taking care of them.

But the intervention that I mentioned is actually a VA-specific intervention of social prescribing, but there have actually been other models of that, including one that the National Health System just wrote about in the New England Journal of Medicine. But they are doing it using link workers to connect isolated people with social interventions. It's a known kind of a thing that is being written about.

Who was involved in the survey population?

The actual survey that we did, even though I work at a VA, included thousands of patients from the general PD population, and there's a lot of women actually that were in the survey and younger women who were not that advanced. So, it's not the standard veteran population that I see day to day. I do work with research and all areas of this sort of interface of integrative medicine and I people tend to come to me because I am a boarded neurologist with a movement sort of background that has a yoga teacher training, as well as an integrative medicine background, which I don't think there really are very many of—maybe one other person on the planet—so I ended up working and collaborating with people.

Are there any distinct differences between the general Parkinson population and veterans with Parkinson disease?

Veterans in general are definitely, at baseline, a tougher population. They tend to be stoics. Then, there's a stigma associated with loneliness, so you actually have to come in and talk to people about it. Sometimes people think if they have a mental health issue, there's a huge stigma. Men are much less likely to identify with this problem and be honest about it, and that's my main VA population. So, I think just normalizing it and saying that this happens to all of us is helpful.

How important do you feel it is to recognize loneliness, particularly in the midst of a global pandemic?

I gave a talk like this the other day and had a colleague actually in a different part of the country write an email and reach out to me because they were lonely and battling a lot of these sorts of issues with feeling not in control of their emotions and things around that. I think this is something that we as a community need to realize affects all of us. That any one of us could become lonely. You could be happily married and still be lonely, so it's really out there, and it is something that we have to proactively identify. There's possibly a neighbor that lives on your street that could have this, be battling this, and just a simple phone call or dropping off something—a nice card for them, saying thinking about you, or something—can help. I think we're all socially connected as a basic human need.

I was really impressed with the data that you know, loneliness is, can impact actually sleep, it can impact our thoughts. If we get so lonely, it actually makes us hyper-vigilant and start thinking about the world in a very paranoid kind of way where we’ll fixate on all the negative stuff. I actually have a colleague with who I am writing something with currently, he's a doctor in Barcelona. In their lockdown, the patients weren't allowed to go out of even their little apartments to go outside. These patients became so lonely and sensory deprived that they all they got was some news once in a while, and they actually started getting psychotic and really anxious and depressed. It really changed their mental state. I think it is it's almost like being in solitary confinement sometimes. We've somehow created some of these situations for our patients in hopes to keep them safe right now, so I think we just have to be really mindful of that.

I think a lot of even my colleagues are just going through a lot in and of themselves with burning out, they're working nonstop on these Zoom meetings with really not a lot of true connection with each other. Part of the beauty of working together in medicine is the teamwork and the checking in with each other and knowing about how your team is doing. I lead a team and so much of what I do is just making sure that we're all doing okay, and that's not easy to do when you’re wearing PPE with masks and a face shield all day long. I can't hug my patients or colleagues and it's a very disconnected way that we're interacting, honestly. It's been, it's been very tough.

I will say I'm hosting a number of my colleagues on a virtual support group for patients, and it's been really nice to see them actually through this type of modality. We kind of get off the line and are like “I miss you; I haven't seen you in 6 months!” Normally, we would have seen each other 3 times at different meetings, and it's just a very different way that we're interacting with even our medical colleagues and health care providers right now. I think we just have to be mindful and vigilant, even in our own selves and with our close colleagues, and just make that extra phone call to check-in or schedule a virtual happy hour with somebody that you know that has just been working nonstop and hasn't had a break. If you to give them a hug—even if it's virtually—I think can be really, really helpful to just share the common human experience of what we're all going through right now.

Transcript edited for clarity. For more coverage of MDS 2020, click here.

REFERENCE
Subramanian I, Mischley L, Farahnik J. Loneliness/Social Isolation as a Risk Factor for Worsened Parkinson Disease Severity. Presented at MDS Virtual Congress; September 12–16, 2020.