Treatment Landscape and Unmet Needs

Watch the full series: Genital and Intertriginous Psoriasis Expert Panel Video Series

Melodie Young, MSN A/GNP-c: Hi, I'm Melodie Young. I'm a nurse practitioner from Dallas, Texas, and I'm here today with a panel of experts in genital psoriasis. I'm going to let everyone introduce themselves.  

John Zampella, MD, FAAD: Thanks, Melodie. We're really happy to be here to talk about psoriasis. I'm John Zampella. I'm associate professor of dermatology at NYU where I work at the Center for Men's Health and do a lot of genital diseases and genital psoriasis.  

Shehla Admani, MD: I'm Shehla Admani. I'm an associate professor at Stanford University School of Medicine, and my practice focuses primarily on pediatric dermatology and vulvar dermatology.  

Michael Payette, MD, MBA, FAAD: I'm Michael Payette, and pleasure to be here with you guys. I'm a private practicing dermatologist in Central Connecticut Dermatology, associate clinical professor at the University of Connecticut, and I actually specialize in inflammatory disorders, including psoriasis. I'm actually really thrilled to be talking about general psoriasis here with you guys.  

Young: So, we're going to talk today about the unmet need and the gap in care. So, there's a gap in the process for patients coming into the clinic, maybe not knowing that they have psoriasis in the genitalia because it does look different. They may not associate the two, and then they may not bring it up or ask specifically. And then unfortunately, we're finding that a lot of dermatology clinicians are also not initiating that this needs to be part of the exam. I mean, if they come to see you or come to see you at the vulvar clinic or at the men's health, they know that that's what they're coming for. But in general practice, you have to have a dermatology clinician that is aware that this needs to be part of the exam process. And then it's not represented well.  

How do you guys even code for genital psoriasis? Do you call it plaque psoriasis, intertriginous? And then of course, the treatment. They're not guidelines of care to tell us what we should be doing. So, let's begin the conversation. Dr Payette, you want to...?  

Payette: Yeah. I mean, I think actually one of the things that complicates the situation even further is that a lot of dermatologists and clinicians are also uncomfortable talking about it. So, they may kind of gloss over. If they even get the patient undressed, they may not even get them undressed completely or ask them if there's anything going on in the genital area because they're uncomfortable talking about it. If you are uncomfortable talking about a disease state with your patients, then inherently they're going to be uncomfortable talking about it too.  

Zampella: And there is a lot of expectation on patient part. When patients go to the OB-GYN, for example, or they go to the urologist, I think patients expect to have their genitals examined. Maybe it was bad on our part, but in dermatology, I don't think we've set that standard as this is part of what we do. There is skin down there. So, I tell my patients, “Listen, I look everywhere you have skin. That includes the genital area.” I think sometimes just getting the word out there that dermatologists should be looking and that it's appropriate for us to look is actually a very important part of events like this and what we're doing with the genital psoriasis consortium and stuff.  

Young: Yeah. And especially if dermatologists are not doing it, then who is? So, if they don't see a urologist, gynecologist, people don't know who to go to, so they get over-the-counter medicines.  

Payette: I think it's appropriate to actually call them by what they are. Do you have any disease on your genitals? Do you have any disease on your penis? Do you have any disease on your vulva? You can't say, "Is there anything going on down there that you want to show me?" Then it creates that kind of barrier there. I think to your point, Melodie, a lot of patients, and they may come in for psoriasis on their elbows or scalp psoriasis or whatnot, and they're not linking that red, sort of maybe non-scaly plaque that they have in their genital area as part of their disease, and so they're not going to just bring it up upright and ask you about it.  

Zampella: I think that's actually another key point. Right? Okay, so maybe even as a dermatologist, you don't feel comfortable. Maybe the patient doesn't want you to look at their genitals. I think the minimum we should do is at least ask. If they come in for psoriasis, they have a psoriasis on their elbows and their knees, you’re like, "Do you have anything in the genitals?" Actually, even sometimes I'll point out, maybe you're not sure if someone has psoriasis or do they have eczema. Sometimes I use the genital involvement, or if it's in the gluteal cleft area, I use that as a diagnostic tool because I'm like, "Oh, this is a psoriasis area." So yes, I need to look or I need to know if this is where your disease is manifesting.  

Payette: Yeah. It behooves us really to do a deep dive because the implication of not diagnosing it, and we'll talk about that later on in the session, has huge ramifications for these patients in terms of disease burden.  

Admani: I think the point that you brought up earlier, how do we code this? So, I'll usually say plaque psoriasis or I'll say inverse psoriasis, but then when I want to go back and really understand my whole patient population, that's a manual search. I have to pull up all my patients with psoriasis and then go through one by one to really understand my own patient set. That makes it really challenging to get more studies on this condition. It makes it really challenging for us to have evidence-based guidelines, more treatment options, and to really assess the treatment outcomes for this very sensitive and specific site.  

Young: Absolutely, the tools. So, when we're looking at PASI scores and other things, and they're talking about 1% body surface area, well, with a few exceptions, 1% about covers, right? That's pretty much it.  

Payette: There may be a few 2 or 3 percenters out there.  

Zampella: Yeah, exactly. We did talk about size matters and some situations.  

Young: So, we were talking about that 1%, that's pretty high-value real estate. Most people would consider that to be one of their sort of, I think an old Steve Martin movie, that was his special place with a special purpose, but that 1%. So, even tracking efficacy of a therapy. We started talking about thumbprints of improvement. There's this much left, or is it just red? But the symptoms become a huge thing, the itching, the tearing.  

Payette: And there's an irony because we have specific codes for other subtypes of psoriasis. We have palmar plantar disease, we have psoriatic arthritis, for example, but we consider genital psoriasis to be an area of specialty involvement. So, one would assume that we should have some mechanism that's formal, whether it's part of the ICD-10 code, which is where I'd like to see it, and I'm sure you guys would too, so that we can go back and look and study and then have treatment decisions based on experience in that space.   

Zampella: I usually do a little trick, at least for my patients with I want to go back is if I say someone has plaque psoriasis and then I'll add balanitis as a little trick so you can search for both codes. But yeah, I agree. I mean, I think the good news is, especially when we get the treatments later and you're coding to get a medication for your patient, for example, I think psoriasis of the genitals is plaque psoriasis, or I mean, I actually distinguish, depending on where it is, you might have inverse psoriasis also on the penis, especially if someone's uncircumcised. So, we can use those codes, and we should use those codes, in order to get the medications we need for our patients.  

Young: Yeah. When you start talking about the perianal area, and the creases—I always call it the nooks and crannies when I'm doing the exam—whether it's the skin cancer screening, or I need to look at your nooks and crannies... I mean, they don’t often. If they saw that you're having stirrups in the exam table, it's probably going to freak them out. So, there are ways to do it where they can be standing. I know you talked about you have your assistant get behind the curtain. I just have the gentleman turn, and if I have a male medical assistant, I have them turn the other way. You said you're with children. How much of an unmet need do you believe there is in the adolescent population for genital psoriasis?  

Admani: I think for genital diseases in general, there is an unmet need. I think that it's important to really separate out the younger pediatric patients and then the adolescents. So, in pediatrics, that's kind of this unique age group where we're teaching them to have more ownership of their bodies. We have to make sure that we're approaching the consent process appropriately, letting them know that this exam is only okay because I'm your care provider and your parent or guardian is also here and saying that it's okay. Generally, we can get to a good exam for a child in that way, but then when we get to the adolescents, their bodies are changing, they don't know what's normal, they're embarrassed about pretty much everything. When we ask them to show us a genital skin to help treat their condition, it's really hard. It's hard to get them to share their symptoms with us and for us to even understand impact on quality of life. That's also challenging.  

I've had many cases where I took care of patients with psoriasis in my clinic, and then a week or so later, the patient or the parent might message and be like, "Hey, there's also something on the genital skin." It's not until later sometimes that they feel that comfort level and they're ready to start talking about it.  

Payette: I mean, adolescents in general, it's like pulling teeth to get them to say anything, right? Yep, yep. How are you doing today? Good.  

Zampella: I was going to ask, in your adolescent patients, do you have parents step out of the room to look at the genitals? That seems like it could be a little bit of an interesting kind of dynamic.  

Admani: Yeah. So, in my practice, whether it's adults or children, when I'm doing genital exams, I like to have a chaperone in the room, and usually I have a scribe in my clinic, and so that scribe often will serve as that chaperone. When the patients are older, so teenage years, I ask them, "I'm going to have someone else with me. Do you want your parent or guardian to stay in the room?" I let them own it, and surprisingly, most of them are okay with it. Everyone else who's not looking turns around. I'm the only person who looks, but they don't necessarily feel strongly about having the guardian leave the room most of the time, but you have to offer it. It's their body.  

Zampella: Yeah, that's amazing. I also have a scribe who serves as my chaperone. Actually, there's interesting data on this too. Actually, if you look at the difference between men and women, men actually universally don't like a chaperone while women will have a higher proportion of wanting a chaperone. But yeah, I tell my patients, listen, my scribe is HIPAA compliant. She does this all the time. I put her behind the curtain so that she can still kind of help and be there. But yeah, it does definitely make patients feel, can go either way, awkward or better.  

Payette: Actually, one of the experiences I've had with a scribe, not infrequently, is most of my scribes are female. I have a lot of male patients, and if I'm doing an exam on somebody, they may decline or may deny that they have anything going on in the genital area, and then they'll kind of lean over and say, "Can I talk to you privately after they leave the room?" Because I think there is a component of they're a little embarrassed about it already, and now they're embarrassed. Even if that person's going to be turned around and not looking, there's still another entity in the room. So, sometimes I find that to be a golden hint that we have to do a little bit more of a deeper dive into that part of the body.