Full video transcript
Hi, I’m Dr Jory Fleischer and I’m an assistant professor of neurology and population health at New York University School of Medicine in New York, and a movement disorder specialist there. I have the opportunity to work with the team on our interdisciplinary home visit program for advanced Parkinson’s patients. What we do is through generous funding from the Edmund J. Safra Philanthropic Foundation and other sponsors, we identified the fact that a lot of the research on Parkinson’s has focused more on early and middle disease and unfortunately we know that this is an entire spectrum, and so as the disease progresses, what we know is that the number of symptoms the patient’s experience increases, the severity of the symptoms increases, and at some point they reach this paradox, this precipice where their symptoms are so severe that they can no longer get to care and that’s unfortunately when they need their physicians the most, when they need their health care team the most, but they can no longer get to us. And so we were really haunted by those patients with whom we have relationships for many years and then we lose contact with them until we hear months or years later that they’re on their way to the emergency room or they’re in the hospital or worse. And so this really grew out of sort of a patient and family connection that we wanted to create something to bridge and provide continuity of care to these individuals and to study this model of care to say, “Is this a way to keep people aging in place, thriving in their homes for longer and keep them out of hospitals, keep them out of institutions where we know that our patients suffer access morbidity and mortality.”
So what we do is we’ve created a team – it’s a physician, either a movement disorders attending, myself, or our fellow, a nurse, and a social worker, all of whom are trained in movement disorders, and we identify individuals that are at risk of loss to follow-up, so they have to have Parkinson’s disease or a related disorder, they have to live in the five boroughs of New York City, be primarily English-speaking, and have several criteria that we think are risks for institutionalization or hospitalization – depression, anxiety, dementia, suspected caregiver strain, lots of falls at home, frequent hospitalizations or concerns that they’ll be re-hospitalized – any number of things and we sort of review these individuals and then reach out to them explaining, “Here’s what we’re going to do; we’re going to come to your house, is that okay with you? Can we invade your space?” – and in New York that may be a very tiny space. Most people have received this really well. So we go out as our team and we sort of work in parallel so each member of the team is doing several things at once, but as a physician I do everything I would do in the clinic, so I do history, I do a physical including the unified Parkinson’s disease rating scale. We talk about falls. We talk about acute health care utilization. So, “since last time I saw you, how many times have you fallen? How many times have you gone to the emergency room or urgent care? Have you seen your primary care physician? Any trouble with your medications or other therapies?” Simultaneously, our nurse peels off to the side and sits down with the medications, whether those are nicely organized in a pillbox or whether they are tossed in a brown paper bag or they’re scattered throughout the house. She sits down and go through them really meticulously to figure out what are duplicates, what are expired, what are errors, what are meds that we think there on, but they’re not, vice versa. And then she walks through the home and does a home safety assessment to look for, you know, this person is falling. We don’t know why, so she sort of becomes the Sherlock to figure out why are they falling. Where are the throw rugs, where is the puppy that we didn’t know about that is causing someone to fall and break their hip, all these different things – how can we keep them more safe when they’re at home. Our social worker will often pull the caregiver side and do a really in-depth psychosocial evaluation of that caregiver, because we know that no matter how good or how severe the patient’s Parkinson’s might be, if that caregiver feels excessively strained or feels excessive caregiver burden, that is an independent risk factor for institutionalization, so we can do as much as we want for the patient, but we need to remember that the caregiver also needs support. So we sort of divide and conquer and then come together as a team at the end sit down and come up with comprehensive assessment plan like medication changes, nonpharmacologic things like, perhaps they need to increase their hydration, or perhaps we need to think about their diet and readjusting protein. We will refer them to numerous in-home services; 90-plus percent of our patients we’ve connected to in-home physical therapy or occupational therapy or speech therapy – the things that we think about when they’re in the office but they kind of need even more in this setting, but often can’t get. We’ll think about not just “Is protein interacting with their medications?” but “Are you eating? Do you have food in your fridge?” and if not, we’ll connect you to Meals on Wheels. So really thinking holistically about the person.
So we followed individuals in this program and that the data that we reported today is really just a small subset, so this was the first 27 individuals with just Parkinson’s disease who did not have cognitive impairment at the first visit, so we looked at 27 people over the span of four visits over a year and what we found is this is to our knowledge, one of the oldest and most disabled Parkinson’s populations ever reported, so at visit 1 their mean age is around 81, they’ve had Parkinson’s for 10 years and their baseline unified Parkinson’s disease rating scale total score is 65, which is quite high. Following them over the course of a year, we unfortunately lost four subjects – 3 passed away and 1 had a diagnosis change – but for the 23 that completed, we found that their Parkinson’s worsened on the UPDRS by about 12 points over the course of that year, and yet our hope was that maybe quality of life – we sort of expected it would decline – maybe we would mitigate the slope of that decline. And what we found actually was that there was no significant change from baseline to 1 year later, and if anything, we looked at 8 different domains of quality-of-life and we saw trends towards improvement in 7/8 so we were really quite cautiously optimistic about our findings.
It has required tremendous investment from nonprofits to hire the nurse, to hire the social worker. My time is protected and so you need to have a physician that is able to do that or mid-level provider potentially, and so we thought about you know what our different options were and we’re in the process of studying some of those. So one thing that we’ve launched to try to get at cost effectiveness and make this more feasible for others is to involve telemedicine and there’s been great work in telemedicine and Parkinson’s by many investigators. We think that this is a little bit different in our population because they are more elderly, they’re more disabled than other PD populations that have been studied and so that brings with it really special considerations. Because their Parkinson’s is more advanced, paranoia, delusions, hallucinations are more common. So it adds an increased layer of difficulty and complication to sort of hook them up to telemedicine because there is going to be more fear and there’s more hesitancy there, but we have our team, the nurse and social worker go with an iPad and they connect to me in the office so we’ve at least sort of found that it is feasible to take the physician travel time out of this equation. We think one way that might be a little bit more doable is to have a nurse practitioner for example, who is trained in movement disorders, to be able to go and bill for these visits because a physician or nurse practitioner could go and bill home visit codes and that is something that each institution has to think about and it really depends on the catchment area that you’re serving. So if you have a group that’s sort of tightknit around you where you can limit the travel time but people are homebound simply because of their disease, that makes it more doable. If you have a really large catchment area, it’s difficult for patients to come to you but it’s also if you’re traveling 200 miles it’s difficult to go to them as well. I don’t think there’s going to be a one-size-fits-all solution but we’re certainly working on that.