Expert neurologists provide insight on unmet needs, challenges to improve access to care, and highlight clinical pearls for the management of OFF episodes in Parkinson disease.
Laxman Bahroo, DO: When you look at OFF episodes, we've come so far. I remember a time when we had much fewer options. We had much fewer classes of medications. Each medication was given multiple times a day. Dopamine agonists are classic examples. They were 3 times a day; now they're once a day. We have more once-a-days available now. Some of the unmet needs are being met. Gradually, we have different mechanisms of action here in treating OFFs. We have things that bypass the gut. We have medications that don't necessarily work on dopamine as the primary target, which is also exciting. But in the years to come, some of the things will be more extended-release formulations that'll come in. Infusions are certainly the biggest unmet need; being able to give something that is subcutaneous. Right now, the only infusible option is surgical. Having an infusional option is going to be wonderful for us. Yes, there will be educational needs for the patient and how to adjust the patients on these medications. But we will get past these points and successfully educate and initiate our patients on this. And then, of course, there are different targets. If you look at any studies out there, every study, you hit a wall with how much you can do with only 1 neurotransmitter. It takes a village of neurotransmitters. You need your dopaminergic medications, you need your other medications that you need such as your nondopaminergic medications, you need your extenders, you need things that come in from different avenues to target and manage as many of the OFFs. And then we contend with the progression of the disease that we're doing. In that sense, there will always be some unmet needs and some unmet targets as we continue to do this. Dr Iyer, what are the main challenges you see in terms of access for patients who experience OFFs?
Sanjay Iyer, MD: In terms of access, it's more a matter of just helping patients understand what options are out there. Again, you're at an academic institution and I'm in a situation where I can spend the time with my patients to talk about OFFs and understand what they're feeling and to be able to let them know, OK, here are 3 good options, and not everyone has that luxury. The communication is important. But in terms of access, it's just letting patients know, here are some options that are available, because most of them have not heard of it. Most of the doctors who are treating patients with Parkinson, they're likely peripherally aware of these options, but they may not use them very often. The thought of titrating a patient with an injectable in the office and the time it's going to take to tie up an entire exam room—those are just the logistics that are out in the community that people face. In terms of whether it's insurance challenges, you and I—our teams will spend the time it takes to play the games and do the appeals and do whatever it takes. It's just understanding which option is going to help, and then we'll go to bat for them. But they need an advocate in that situation.
Laxman Bahroo, DO: I completely agree. That's a great discussion. And the take-home messages from our conversation are exactly that. The first take-home message is to educate your patients to figure out what OFFs are or to be able to discuss OFFs. That's the most important because if your patients aren't bringing up OFFs and if you're not bringing up OFFs, it doesn't exist, even though it exists, it doesn't exist in their mind, they don't understand that this is something that they need to sort out or bring up to you. Educate your patients to bring up OFFs or ask probing questions about OFFs. That would be probably the first take-home message.
The second is tell patients that there are options for this. There are options to empower patients. When I initiate an on-demand therapy, I tell them, Look, the good news here is that now if you have an OFF, you can take care of it. You can manage it. You don't have to sit and suffer and wait for the next dose or wonder if you should have taken the dose or try and see if an extra dose will help or not help. Now you can take charge of this and move on from here. The second is patient empowerment. And the third is stratify your patients to try and select the best on-demand therapy for them based on what they're doing. And if you're not able to, and if they don't succeed with 1, then there's a second option. There's a third option. Maybe you do the dial of OFFs. You try with 1 that you think is a good fit for them. Either it's not a good fit, or it's just not as effective, so you go to the second and the third. And you can work through that process. And probably if I had a fourth 1, don't think the injectable is as complicated as it seems in terms of both in your patient's mind, as well as the health care provider's mind of like, exactly how difficult is it going to be to tie up a room? How am I going to have to dis-titrate it? How will I find out if they're at the right dose? All of that work is being done by an educational team that can sort this out.
Sanjay Iyer, MD: If I had to give 1 point of advice to anybody in terms of how you reduce the frequency of your OFFs or the intensity of the OFFs, the duration of your OFFs, bring your care partner with you because they'll advocate for you. I know a lot of my male patients especially will come into the office saying, Oh yeah, I'm fine. Well, their wife will say, “I don't know if you're fine, but let me tell you how he's walking in the morning. Let me tell you this,” and suddenly it's a different discussion. Someone who can advocate for you, that's important.
Laxman Bahroo, DO: Absolutely. Sometimes many folks will have a point-counterpoint. And sometimes I'll tell the spouse, most typically, or the sibling in some cases, or the child, 1 thing I would appreciate is if you folks came in and the day prior to this or on the way to the appointment, have a quick check-in with each other of what's going on, and that might be helpful. And you come in with 1 voice and you have some agreement, and we can maximize our appointment time to talk about what are the biggest issues. In fact, I'm an advocate of having a checklist of what are your top 3 concerns? We can probably get through 3 in the average visit. And if there are big 3 options that take a lot of time, we'll just schedule another visit whether that's virtual or in-person to sort them out. But we can probably go through a couple of those concerns and make a plan that is reasonable for you to address your top concerns with your Parkinson symptoms. That's important to show patients that this is your time in front of a person managing your Parkinson. There are lots of things in your Parkinson that go on. OFFs are a major component, but there may be many other things. Make a list, bring it to your doctor's attention. And since I'm from the DC area, if you see something, say something, bring this up. If it's not top of your mind, it's not the top of your provider's mind, therefore nothing happens, and you suffer in silence.
This is a great discussion we had talking about OFFs and therapies and how to empower patients. And that will bring us to a close. Thank you very much for watching this Neurology Live Peers and Perspectives®. I hope this was very educational.
Transcript Edited for Clarity