EP 37 - Smart Therapies for Parkinson’s – When Is the Right Time?

🎙️ We’re back with Episode 37 of Parkinson Weekly, hosted by Prof. Bas Bloem.

On this week’s episode of Parkinson Weekly, recorded live at the European Academy of Neurology (EAN) Congress in Geneva, Prof. Bas Bloem discusses advanced treatment options for people with Parkinson’s experiencing complex response fluctuations.

Prof. Bloem explores why the term “advanced therapies” may itself create a barrier to treatment and explains why he prefers the term “smart therapies”. He discusses the range of options available, including deep brain stimulation, focused ultrasound and pump therapies, and explains how the 5-2-1 rule can help identify when it may be time to start the conversation.

The episode also looks at the importance of shared decision-making, ensuring people with Parkinson’s and their loved ones are informed about all available treatment options and can work together with their clinical team to determine the most appropriate approach.

Key topics include:

• What are “smart therapies” for Parkinson’s?
• Recognising complex response fluctuations
• The 5-2-1 rule and when to start the conversation
• Deep brain stimulation, focused ultrasound and pump therapies
• Why discussions around treatment may be happening too late
• The importance of shared decision-making and individualised care

Have a question you’d like Bas to answer in a future episode? Email us at parkinsonweekly@gmail.com – we’d love to hear from you.

Transcript

SPEAKER_01 0:00

Hi, this is Paulem recording live from the European Academy of Neurology in Geneva. And today I'm going to talk about how best help people with complex responses fluctuations uit state-of-the-art advanced therapies. Who are the right candidates, what are the options and how to enter an open debate with folks that are candidaten. You will hear more about it here on Parkinson Weekly. I want to thank Bial, pharmaceutical company from Portugal, who is financially supporting this Parkinson Weekly podcast series. Now, I haven't told you much about them before, but they have done a donation without asking for anything in return, other than me recording these episodes. So everything you have heard so far, everything you will hear from here on is completely my opinion, completely unbiased. But I think it is fair to thank Bial for giving such an unrestricted educational grant. Says a lot about what a nice company it is, and I want to thank them for their support. What I'm going to talk about today is unrelated to Bial's products, but it's about advanced treatment for people with complex response fluctuations. There are a number of options. Roughly speaking, there is deep range stimulation, there is focused ultrasound as an alternative now, which is early days. There is pump therapies either into the gut or through the skin. And all these treatments collectively are called advanced treatments. And why advanced? Well, you could say it's advanced thinking or it's state of the art. But there is a problem with all these therapies by naming them advanced therapies. Because what is happening is that people with response fluctuations who would be really good candidates for any of these treatments hold off on initiating even discussions around advanced therapies because they think if I consent to an advanced therapy, it means I have now advanced disease. So if I postpone that discussion, I can fool myself and create the impression that I still have early Parkinson's disease. And if you are an individual living with Parkinson's listening to this podcast, or if you are a near one or a friend, or if you are a physician, postponing treatments for Parkinson's just for the sake of postponing is the stupidest thing to do. It is true for early treatment in untreated de novo patients, it is also true for all of the advanced treatments. In a little paper I published with Simon Lewis, we've argued that maybe the term advanced treatments should be replaced by smart therapies. Because everybody loves a smartwatch, everybody loves a smartphone. We now equip our houses with technology and create smart houses. So if we would call them smart therapies, maybe people with Parkinson's would be more amenable to engaging in discussions on time. And what is on time? We've talked many times in this podcast series about the response fluctuations. These can be treated for the first years of the disease in a gratifying way with oral pharmacotherapy. But there might come a phase where you want to begin at least starting a debate about one of the smart therapies. There we go, smart therapies. Starting the discussion doesn't mean you're on a one-way street leading to one of those treatments. The outcome of such a debate could be that you continue optimizing oral pharmacotherapy, which is a viable option for people with complex response fluctuations. But what we see is at least two problems. One, the discussion is started too late. And during a beautiful lecture here at the EAN, Rianne Esselink, a wonderful, wonderful neurologist in my own university medical center, showed that in the Netherlands there are about 6,000 patients eligible on paper for one of the smart therapies. In real life only 500 receives it, leaving 5,500 patients. I wouldn't say in the dark, but I would say probably probably many of them under treated. So if the 521 rule applies, start the discussion early. Others are really big fans of subcutaneous epomorphine. Still, others are huge fans of intestinal levadopa gel combined with entacapone. And that's all good and well because I think if you prescribe a treatment, you need experience, right? You need to build up a volume. But it is critical, and Rianne Esselink in her talk said that we advise patients about all possible treatments through a process called shared decision making. And shared decision making means you share all the knowledge that is normally in the heads and minds of doctors with people with Parkinson's and their near ones so they can prepare at home, think carefully, and then enter a debate with the medical team around what is best for you as an individual. Now, importantly, shared decision making does not mean I want this treatment and I want it now. There can be reasons, for example, poor cognition or in very old age why you are not a candidate for deep brain stimulation, even if you wanted to, right? But shared decision making means sitting down in an equally weighed debate with the medical team after the patient has heard about all the treatments. And if you have no experience in delivering a particular treatment, refer the patient elsewhere. Ultimately, optimal Parkinson care is teamwork. If you can do it yourself, brilliant. If your patient together with you decides that another treatment might be better, refer the patient to a center that will deliver that treatment. Think about initiating the discussion on time. Use informational educational materials to educate your patients and make sure that you enter a debate where either the smart therapies or optimizing oral pharmacotherapy is a viable outcome for all these people. Ultimately, Parkinson's is a treatable disease, but treat Parkinson's when it's a treatable condition. So don't wait too long.

SPEAKER_00 8:08

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