Impact of Sialorrhea on the QOL of the Patient
Stuart Isaacson, MD: People often think about sialorrhea as drooling in Parkinson disease, as just being something that happens which is not a big deal, and it’s often minimized by not only clinicians but also our patients—not only by their caregivers, who are often maybe more concerned about it. And we know about the physical problems that can occur in the skin and the risk of posterior, and aspiration, and those risks, the social withdrawal and embarrassment. Patients stop going to dinners and lunches. And we know how it influences caregivers and how frustrated they can be when patients just can’t stop drooling. Why are you doing this? It can disrupt sleep overnight, and patients have to get up and change their bed clothes or the pillowcase.
But I think there’s more to it, and some of our patients have described it in ways I never thought about. I had a patient whose wife comes and says, “Well, it’s not just the drooling that I see that’s embarrassing, but it goes on the floor.” I think he’s going to slip on the tile. I never thought he’d have so much drooling that it would actually go there, but where else is it going to go? If it doesn’t drip onto the shirt, it’s going to drip onto the floor, so that made me think differently.
Richard M. Trosch, MD: I’ve had patients who obviously drip on their shirt. I have patients who have to wear a bib or they have to change their clothing 4 times a day or their clothing is stained because the drooling. The other thing we didn’t mention is the gurgling speech. It’s hard to speak when you have too much saliva in your mouth, so it interferes with communication. Speaking on the phone it’s very hard if you have excessive saliva. And it’s often worse at meals, so imagine going to dinner with friends and they may not have it the rest of the day, but they serve the steak and the faucets come on, and it’s very embarrassing, and it impedes their social life. It’s a significant problem in terms of not just the physical problems, as you mentioned—the excoriation, the aspiration—but the social isolation. You have grandkids and your granddaughter wants to give you a kiss, and you’re drooling. It’s horrible in terms of the interaction, so it interferes with interpersonal relationships.
Stuart Isaacson, MD: I think it has much bigger impact on a patient’s quality of life, which we’re always trying to improve. We tend to minimize some of these things that we can treat that impact on quality of life, and we focus so much on motor symptoms, and motor fluctuations, and off periods, and off time, and even dyskinesia when really there are nonmotor symptoms that often are much bigger drivers for impaired quality of life than these motor symptoms.
Richard M. Trosch, MD: Everyone seems to focus on tremors or the on-off periods, which are significant and could be a problem. But nonmotor symptoms are better predictors of disability.
Stuart Isaacson, MD: Right. The 1 thing about treating sialorrhea with botulinum toxic substances is that the improvement is so predictable and often reliable to begin within a week and see the full effect so quickly, and it lasts often 3 months. Sometimes it wears off sooner, but sometimes it lasts even longer than 3 months. I think patients begin to rely. One way we think about it at times is if the patient is being treated for sialorrhea with, say, Myobloc, they’re coming every 3 months. They’re not missing their appointments. These are not the patients who no-show. They’re coming in and trying to come in earlier to make sure they can get the injection again. It really is a testament to the demonstrated efficacy, safety, and tolerability that we saw in the clinical trials. But we have seen this for a long time, even before these recent approvals for indications with these 2 botulinum toxic substances, Xeomin and Myobloc. We’ve been using these toxic substances for years to treat sialorrhea.
Richard M. Trosch, MD: My experience has been the same. I can think of many patients who were reluctant to have that first injection. They didn’t want to have it, and they agreed to have it, and then they’re not missing appointments after that. Once they see the benefit, then they’re pretty religious about keeping those follow-up injection appointments.
Stuart Isaacson, MD: Sometimes patients tend to minimize the symptom, whether it’s out of embarrassment, or they just don’t want another medication, or they want to talk about something else that day. What do you do when a patient seems that they would want to have the toxic substance, but they’re maybe a little fearful or a little reluctant and not really feeling that it’s safe? How do you talk to your patients? What do you say to them to reassure them that this is something that we’ve used for a long time, and in trials was found to be safe and effective?
Richard M. Trosch, MD: I tell them that I’ve been using it for about 12 years and that I find it to be very safe and very effective, that I’ve not seen systemic adverse effects, the effects that may occur local. It’s going to reduce their production of saliva, and I’m going to start with very low doses. I start with only the parotid at a very low dose, usually 1500 to 2000 units, which I understand from most people is going to be too little. And I say I’m probably going to underdose you. As long as you don’t have adverse effects, we can go up on that and we’ll go up slowly, so you don’t get too much. That would minimize. I very rarely, with this approach, have people complain of dry mouth. And so adverse effects are pretty rare and far between. Benefit is pretty much the rule, so I tell them that they’ll probably do very well.
Stuart Isaacson, MD: I like to go over to them and show them that there is going to be a hypodermic needle here, and here, and here, and here. In fact, that’s about how long it will take. Then within a week or 2, you’re not going to have this drooling here, and on your shirt, and elsewhere. So you don’t have to have this anymore. I think we need to try to be proactive and let patients know that there’s an effective treatment for this that we found to be safe, and the dry mouth that occurs is often along with the tempo of the improvement, and it peaks and falls off as well. It’s often not a problem that prevents patients from being reinjected.
Richard M. Trosch, MD: Do you use a 30-gauge needle as well, the ½ inch?
Stuart Isaacson, MD: Yes.
Richard M. Trosch, MD: And for a lot of patients, I’ll do the procedure, and they’ll ask me when I’m going to start. And I say, “We’re done.”
Stuart Isaacson, MD: We’re done.
Richard M. Trosch, MD: It really is very quick and, for most people, fairly painless.
Stuart Isaacson, MD: When we put together this under recognition, it probably reflected not having effective treatment options. But now that we have treatment options, we’re beginning to recognize in our patients how much it’s impacted their daily activities and impaired their quality of life. The more we talk about it, the greater awareness we have to our patients, their families and caregivers, to our peers and other clinicians who treat patients with Parkinson. Recognizing its impact on daily activities and quality of life will drive more people to want to inject to try to help their patients.
