December 12, 2016
Editor's Note: Last month, former US Attorney General Janet Reno passed away from complications of Parkinson disease (PD). With the condition in the news as a result, clinicians are no doubt seeing an increase in patient inquiries about the debilitating neurodegenerative disorder. Medscape recently spoke with Rachel M. Dolhun, MD, vice president of medical communications at The Michael J. Fox Foundation for Parkinson's Research, about the latest in understanding and managing PD.
Medscape: Janet Reno passed away from PD complications at age 78. What is the typical lifespan for a patient with PD?
Dr Dolhun: PD is typically diagnosed around age 60 years or later, though some patients are much younger. And there is really a wide variability in the longevity with PD. It depends so much on the individual, so there's really no "typical" lifespan for a patient with PD.
That being said, as I just mentioned, the average age of onset with PD is around 60 years. So the mid-70s would be a typical lifespan for many patients with PD, which isn't that shy of the average lifespan of adults in the United States, at 78 years.
When patients ask things like, "What would be my normal lifespan?," or, "Am I going to die with PD or from PD?," there are certain things we can discuss that may be predictors of better or worse prognoses—things like whether or not a patient has significant dementia or cognitive dysfunction, which could lead to a shorter lifespan. Also, prominent gait and balance disturbances can signal a different progression from prominent tremor.
Medscape: What are often the actual causes of mortality in patients with PD?
Dr Dolhun: In people who have more advanced PD, and especially those who are hospitalized, we know that there are more common problems associated with PD that they eventually could succumb to. These fall into four main categories: One is trauma, with injuries that are related to falls. The second is pneumonia. Most commonly, we think about aspiration, but also other infectious-related pneumonias. And then there are other infections, things like urinary tract infections or wound-related infections. Also, blood clots can be an issue.
Medscape: How can doctors counsel their patients on certain precautions to lower the risk for these complications?
Dr Dolhun: Obviously, gait and balance issues can be a difficult problem in PD and lead to trauma and falls. Physical therapy can be really helpful in this regard. If gait and balance issues do arise, I always recommend that physical therapy gets involved. They can evaluate for a walking aid, if that's necessary, and recommend an appropriate one. You can have an occupational therapist go out to the home, evaluate for home safety, and recommend specific aids that would be helpful to make daily activities safer and easier.
For things like aspiration pneumonia, if swallowing issues come up, you can have patients go through a swallowing study; you can also refer them to a speech-language pathologist who can recommend specific dietary and behavioral modifications. And then there are more involved options like feeding tubes. These certainly don't end up being necessary for everyone, and people often don't want to talk about this as an option, but it's something you can bring up in a nonthreatening manner early on in the course of management, before it's required. Having the conversation early can make people more comfortable with it.
Medscape: Have any recent advances been made in diagnosing PD? Are we diagnosing it earlier than we used to?
Dr Dolhun: As far as catching PD very early on, I think that's something we're still looking for. The diagnosis is still made based on a person's history and physical examination. And as far as looking into better diagnostic markers and ways to better diagnose PD earlier and more accurately, there are a few big research initiatives going on there.
One is, as you know, the Parkinson's Progression Markers Initiative (PPMI). PPMI is an observational study we're running that has been going on since 2010. We're following a thousand people with and without PD over time. We do physical examinations; we look at their cerebrospinal fluid and other biological markers, imaging studies, genetic markers, and clinical markers to see if there's some objective measurement we can use to diagnose PD and to help determine prognosis.
I think that ultimately this will help us figure out not only the diagnosis of PD, but it will also help us identify subtypes and heterogeneity of PD, which could help improve treatment.
Another area that a lot people are looking at is wearables. People are exploring whether things likes apps, smartphones, smartwatches, and FitBits® can help track movement in PD and help us gauge things like tremor. These could help doctors and patients not only make a diagnosis but also figure out medication management and prognosis over time. Wearables are even being brought into research studies at this point.
Medscape: Finally, what about advances in treatment? We're all familiar with L-DOPA and dopamine agonists, but what else is out there now?
Dr Dolhun: Right. Sometimes patients will say, "L-DOPA? Hasn't that been around forever?"
And it has been around a long time. It was developed in the late 1960s, and it's still the gold standard, which is in a way a good thing and a bad thing. We know it works really well, but it has these complications that can develop. So over time, as the disease progresses, it doesn't necessarily work as well. And with long-term use and progression of disease, it can contribute to dyskinesias or abnormal involuntary movements.
I think something important to point out to primary care providers or even general neurologists is that we have some new reformulations of L-DOPA that hit the market in the past 18 months. We've got Rytary™, an extended-release formulation that contains both L-DOPA and carbidopa. We've also got Duopa™, which is a gel formulation that can be continuously infused directly into the small intestine, where L-DOPA's absorbed. Duopa is more for maybe patients with middle or later stages of disease.
Complementary with these new formulations are other classes of medications. Dopamine agonists may not be for everyone due to side effects. But we've got complementary medications that can kind of boost the effect of L-DOPA and dopamine agonists—drugs like monoamine oxidase B inhibitors. We've heard of Azilect® or rasagiline and selegiline. We've got catechol-O-methyltransferase inhibitors that can boost the effect of L-DOPA and help it last longer. A new one of these called Ongentys® was just approved in Europe.
And then we've got amantadine, which is approved for both the flu and PD symptoms. We use it to treat the symptoms of dyskinesia too because we know that it works fairly well for that. We've also got a medication in the pipeline that's an extended-release formulation of amantadine that could be approved for treating dyskinesia.
So it's really important to know that there are a lot of other classes of medications that can be used complementary to the L-DOPA. Choosing the correct treatment for a given patient can get very complicated, so if you're a primary care physician or general neurologist, referring your patient to a movement disorder specialist is not a bad idea.
Medscape: What nonpharmacologic interventions can be helpful to patients with PD?
Dr Dolhun: The biggest one is exercise, which we recommend for every single patient. I think there is some form of exercise that every patient can do, no matter their level of fitness and their stage of PD. And at this point, no one form of exercise has been proven more beneficial than another. So if one patient likes yoga and one likes dancing, then great. Have them perform whichever form of exercise they enjoy. Referral to a physical therapist can again be very helpful in devising an effective exercise regimen.
Medscape: Finally, how long after diagnosis is medication typically started? And should everyone with PD be on medication?
Dr Dolhun: This is something that's individualized for every patient because our current therapies are all symptomatic—meaning that they work by easing the symptoms of PD and improving quality of life.
Which medication to start and when really depends on the patient and whether their symptoms interfere with their function and abilities. If a patient comes in and says, "You know, I have a little bit of a tremor, but it's not bothering me. I don't want to start medication right now and would rather just continue my exercise regimen," then that could be fine. On the other hand, if you have somebody on the other end of the spectrum who has, for example, significant tremos that are interfering with their ability to function at work, then it's probably time to start a medication. PD management is very individualized.
http://www.medscape.com/viewarticle/872882
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