Impact on Patient Quality of Life and Interpersonal Relationships

Experts examine the multidimensional burden of genital and intertriginous psoriasis, including effects on intimacy, daily functioning, and psychological well-being. Gain insight into the clinical consequences of delayed diagnosis and the importance of structured assessment tools to capture quality-of-life impact and inform treatment decisions. 

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

Michael Payette, MD, MBA, FAAD: For this next section, we’re going to look at a couple different things. We’re going to explore the impact of quality-of-life implications for patients with genital psoriasis. We’re going to talk about the misdiagnosis and risk of underdiagnosis in this population. Before we get there, I really want to start off with, what do you guys do in terms of documentation? Are you actually using any specific tools? Are you using any patient-reported outcomes? I mean, you kind of touched on photos already, but there’s things like the static PGA, for example, the Physician’s Global Assessment, which ironically, in the general space, is actually a 6-point scale. It goes from 0 to 5. Most of us think of the PGA as being 0 to 4, but we actually have a 5, which is very severe, above severe, for the space.  

Or, do you use the DIS, the Dermatologic Intimacy Scale, which is an 18-question exam assessing the impact of a patient’s disease on their intimate relationship? There’s the Psychological Wellbeing Index, which is a 22-questionnaire that assesses 6 domains to look at the impact of genital psoriasis on the patient’s psychology. Of course, there’s the Patient Health Questionnaire, the PHQ-9, which looks really at depression. Do you guys use any of those PRO outcomes or those assessments in your day-to-day practice? 

Shehla Admani, MD: I don't. Yeah. I find it really challenging to have time to do all of those things in a visit. So, my documentation, my discussion, it's all usually just open-ended questions for the patient to let me know. Then, once they start to bring something up, I'll dive a little bit deeper. For example, if they tell me I'm having so much discomfort that I'm only able to wear certain types of clothing or I'm not able to do these activities, I'll make sure to document that and then to see change over time at the next visit, I'll bring it up again. I personally have not used any of the standard scales. I don't know if you guys are doing that. 

John Zampella, MD, FAAD: I think Mike's kind of overview of those is exactly why we don't do them: 22 questions, 17 questions. Literally the whole action. I think they're great for research purposes. I'm always happy when I read a clinical study that says psoriasis has a DLQI, a quality-of-life impact of 9, which is really bad. I think that's great to read a paper on. But in practice, you have 10 minutes with a patient. You have to do the whole exam that we're talking about, list the whole history, and then figure out how to grade this. So, I actually tend to do something along the lines of an IGA. I'll say in my assessment plan, mild, moderate, severe, IGA of 3, or something like that.  

Another thing that I do that's just kind of quick and dirty is, on a scale of 1 to 10, how does this affect your life? 10 being the worst and one being not at all. Just give a number because you can track over time with that also. It just gives a little bit of an objective measure without having to bust out a clipboard and a bunch of papers. 

Melodie Young, MSN A/GNP-c: Yeah. I mean, I'll say things to give them some sort of guidance in trying to describe it. Let's say from a pain perspective, does it feel like a paper cut? Does it sting? Does it burn? Is it every day, or is it just with sexual activity or any sort of friction? Mostly I'm asking, does it interfere with your life? Because my goal is to make you so clear that you don't even remember that you have psoriasis anywhere, but particularly in that high-value 1% of your body. There's a lot of blood flow and innervation there for a lot of reasons, but it can be one of the most uncomfortable places. So, asking them quality of life, can you do everything you want to do? Does it impact your sex life?  

I've had women talk about not being able to use sanitary napkins because it was so irritating, and a lady that a gynecologist sent to me because she was going to deliver within a month, and her genitalia was so bad from her psoriasis. They were trying to decide if we could get it well, or they were going to have to do a C-section. It's just the daily impact that having painful, red, flaky, miserable genitalia. I mean, watch a ballgame and see how many times people are adjusting the furniture, moving it around and scratching and itching. You see people trying to do it politely, but it's a miserable condition. So, if I'm improving their life, I think we're on the right track. The trick is, when do you need to do more? When is what you've done not enough that you need to add something else? 

Payette: Do you guys do clinical trials? 

Young: We do. 

Payette: You do? Okay. So, I think, John, you mentioned it perfectly. These tools, I think, are very advantageous. They're way too time consuming. They may not even integrate into EMR, but we do them as part of clinical trials. That's usually set up by the sponsor and whatever criteria that they're going to want. So, if you're not using those, and you kind of touched on it a little bit, how does this impact your daily life? How are you guys assessing for depression? We know patients with psoriasis already at baseline have a higher incidence of depression compared to those without psoriasis. How are you assessing if there's an impact on their sexual relationship or non-sexual relationship? 

Admani: Yeah. I think for the sexual relationship piece, I'm so glad that you brought that up. As dermatologists, we need to get more comfortable talking about sex. Our skin conditions are impacting our patients' sex lives, and we need to be able to talk about it and talk about it comfortably, and it's okay to ask detailed questions. So, I've had patients who are very young who choose not to have sex. I've had patients who are very old who are having a lot of sex, and you would be surprised by that. You don't want to make assumptions. If you just say, "Hey, are you sexually active?" that doesn't tell you exactly what they're doing. So, it's important to ask questions and to get a good understanding. If they tell you, "I'm not able to do a certain thing," trying to understand, is that something that you want to do? Because if that is something that you desire, then our treatments should be aimed at helping you to achieve that. 

Zampella: Yeah, I agree. I don't do a lot with screening for depression, although we probably should do more. I think when we're talking about genital psoriasis and genital diseases in general, that is a natural segue to sex life. Actually, it's one of the motivators sometimes for people to come to the dermatologist because they're like, "Every time I have sex, my penis turns all red and it doesn't feel good.” 

Young: Their spouse will send them. 

Zampella: Exactly. Well, whether they or their spouse. I think that also brings up taking a detailed sexual history. If someone has genital-only psoriasis, do they have an STI? We should be screening for STIs. What are your sexual practices? Is this a contact dermatitis, that you're using some banana-flavored lubricant that's giving you a contact dermatitis? So, in order to even make a diagnosis, you almost have to get into the nitty-gritty on sex. Actually, Dr Warren Hayman, I don't know if you guys know him, he runs the DermWorld Journal. He wrote a nice little piece about all of the diseases associated with psoriasis and dermatology diseases associated with erectile dysfunction and how dermatologists should be more comfortable talking about what's going on under the sheets. 

Admani: Yeah. 

Young: Yeah. There's so much advice that's incorrect, and a lot of times they'll seek information in the privacy of their own home with their phone, looking to see, and they're getting direction on hygiene practices, concerns about sexual lubricants or condoms, not knowing what they can and can't do. And again, the dermatology community has the information, they have the skills, and really need to direct them and make it comfortable where they can say, "Is it okay if I use this or if I do that? Can I remove hair? How do I remove hair if I want to do that? Piercings, is it okay?” I mean, there's just so many things, and you want them to be comfortable that you're not going to be surprised by anything they bring.  

They'll say, "Can I show you my penis?" I'm like, "Sure.” If I hadn't seen at least 2 by lunch, it's a great day." It's just skin. Approaching them, being able to say, "Yes, we can do whatever." I think depression... I see more issues, or maybe I'm more attuned to it in the teens and that college-age group and the 30-somethings. That's when I became really aware of the underdiagnosis and undertreatment of genital psoriasis, and particularly if that's kind of the only place they had it or it's the most impactful. 

People would say, "Well, I have 1% body surface area. I've got a little bit on my elbows,” but you have it on your genitalia. That's got to be impacting you. And then saying, "If I could get rid of that for you, if we could fix that, would it change your life? Would that make a difference?" You have to give them permission, to say, "That has to be hurtful. That has to be really hard on you emotionally." Most of the time that will open the door. I don't want to treat their depression. I just want them to know that we see it, and they're not abnormal. It's not a hygiene problem, and it's not abnormal for them to feel that way. Then, start the process of getting them clear because getting people better is one thing, getting them clear is another thing. It really does change lives. Once you start that process, that hope and that opportunity that they can be normal is what we live for. 

Payette: Are you reassessing when patients come back for follow-up if there's been an impact on the therapy that you have instituted in terms of not just their skin clearance, but has it changed their quality of life? Have they felt better about themselves? Are you guys asking those follow-up questions? 

Admani: I talk about sexual activity at all my visits. So, if there was something that they couldn't do that now they can do, or something that feels better, we'll definitely talk about that. For depression specifically, oftentimes I'll see people who are very tearful when having the conversations. So, it's just some cues that I get that maybe they are having depression, and I'll notice that improve, but I don't know that I do the best job of really diving deep into the depression stuff. 

Zampella: I agree with that. I think on the depression front, or the overall wellness front, it's almost self-evident when someone is covered in psoriasis and then you give them a treatment, and then they're clear and they come back. We all have these stories, "You saved my life, doctor," this kind of stuff. 

Payette: "I’m going to send my whole family to you." 

Zampella: Whole family's coming. Yeah, exactly. 

Young: The best way to grow a practice is to clear people. 

Payette: I'm sorry, my panel's full. 

Zampella: Exactly. So, we have those stories. I think for me that's like, I write in my note, “Patient very satisfied.” Actually, I ask patients that: “Listen, when you're happy, I'm happy. So, if you're not happy, then we should try to do more.” Then, if they are happy, then great. We keep doing what we're doing. 

Payette: I do something very similar. I always ask patients, “Are you happy with the treatment that we've done or the plan that we've outlined? Is there anything I could be doing to make you happier?” Because if they then start saying, "Well, I wish I had a well-invested 401k or my kid didn't get suspended at school," then I know we're on the right track. Sometimes maybe they're not comfortable, and they may say, on the other hand, "Well, my skin's looking really, really good with the treatment, but I'm still having difficulty with my spouse in bed," for example. Or, "I don't get the red penis as often. It hurts when I have intercourse, and I can't go as long as I want because it starts to be burning or irritating." I get those kind of questions. Yeah. 

Young: Yeah. Decades ago, when all we had was really corticosteroid, we had patients that we would help them plan for sex. We'd say, use the steroid, something more than just a mild one. Use it for a few days before you're going to go away for your anniversary weekend and try to get the genitalia better. Then, when you get home, you'll probably have to do it, and we'd have to talk about petroleum jelly or other things to kind of help with the skin. And I'm horrified now that I... 

Payette: That was what we used to do. 

Young: That's what we did. Calcipotriene, tar.  

Payette: Although, I can't help but actually think there's got to be a movie where that scene has been played out where, “Honey, I've been using the topical steroid for 3 days, and you're not going to have sex with me now?” That's a commercial. 

Young: I shaved my legs for nothing. I think there's a country song there somewhere. 

Payette: Something along those lines. It's funny. 

Zampella: Yeah, that is kind of crazy that people had to plan. Even now, people will come in and tell me that they have to plan around doing stuff because they are undertreated or untreated with genital psoriasis, and they're like, "I have to wait 7 days before I have sex with my wife,” or whatever. So, it still happens. 

Young: Well, even with topicals, people ask a lot about a topical product. I'm shocked at how often they say, "Well, what happens if my pet rubs my hand and I put it on my hand?" But if you use an ointment or a medication on their genitalia and then, “Can I have sex after, do I wait till after to do that?” Do y'all ever...  

Payette: I have a funny story about this because you know how with a lot of the topicals, we say it's not for intraoral, intravaginal use. I had a lady who was maybe 61, 62, and to your point, you don't always know what people are, never make assumptions. 

She was like, "So, I just wanted to make sure, is it okay if it gets into my mouth?" And I'm like, "I don't understand how that would be relevant because I'm treating your genital disease." And she's like, "Would it be okay if it got in my partner's?" It was like the lights went off. I wasn't even thinking along those lines, but you raise a great point. So, I kind of want to use this part, now that we're talking about therapies, as a little transition just so we don't miss the concept of delayed diagnosis or misdiagnosis. I'm sure you all have stories along these lines. I have unfortunately way too many, and most of them go as follows.  

The patient had psoriasis. They were given triamcinolone, and then they maybe responded for a few weeks. Then, they started losing response, so they go back to their dermatologist or their primary care physician and they get clobetasol. They just make the assumption that these topical steroids are for psoriasis. They have a rash down there, and you see this patient 7 years later, and they've been using mid- to high-potency topical steroids for years. I have a very young man. It's a very sad story. He's 27 years old, African American, and he was using clobetasol for 4 years, twice a day, consecutively on his genitalia. It is completely depigmented, and he has so much atrophy of his penile skin that his main reason for coming in was, "I physically can't have sex."  

I have women who have been using it, and they get stretch marks and striae on the upper medial thigh. I had this one woman, she's in her late 20s, and she had—actually, it's kind of sad—she had an early stroke, so she's been under the care of assisted living, and they've just been slathering triamcinolone in her groin, actually triamcinolone-nystatin, the combination product, for years. Now she's got these intense, and basically, you’d almost say there's no dermis left, right? It's just epidermis and then straight to fascia because the striae are so deep. So, there is a real risk if we don't appropriately diagnose or have a delayed diagnosis. 

Admani: Yeah. I think one of the big things that I see in my vulvar disease clinic is that when women go to a care provider for a vulvar complaint, there's always this initial assumption that it's yeast. They don't necessarily do an exam. They don't do treatment. These poor women think that they just have chronic yeast for their whole life, and they never really get a good assessment. So, I think the importance of panels like this and having these conversations… we need to do these exams. It is important to take a look initially when you're trying to make the diagnosis and then take a look to make sure it's improving. Because I have had patients who went on to have vulvodynia, and then they continue their steroid, and that's not a treatment for vulvodynia, and then the striae developed. Or other patients whose rash did not get better, and then it's extramammary Paget’s. 

Payette: Right. 

Young: Just go to the drugstore and look at all the OTCs that are associated with genitalia. It's really amazing that people are supposed to figure that out on their own. The things that are over the counter that used to be prescription medications help a lot of people, but really you kind of want to say, if it's not well, they have the disclaimer. If it's not well in a week, go see a physician. Getting the correct diagnosis just saves so much damage, so much heartache. Your 20s are really important. Your 30s are important. I'm in my 60s. My 60s are important. I always say, and I'm a firm believer, that people are happy when they have a great sex life.  

I want as many people in this world to be as happy as possible. We want to be happy, whole, healthy, and it's such a simple thing, but if a skin ailment is preventing them from having a fulfilling sex life or relationships, or being able to do yoga because they can't wear the clothing that they need to without it irritating the perianal area, which we haven't even mentioned. That's not part of this discussion, but it's in the neighborhood. I mean, it's so important that all of that be diagnosed correctly and treated correctly and referred out. I mean, we just have to do a better job. 

Payette: The irony is that we've had topical steroids for 70 years. If you actually follow the National Psoriasis Foundation, the International Psoriasis Council, their latest statement as to when to progress to systemic therapy is body surface area or involvement of a specialty site, or failure of 2 consecutive 4-week trials of a topical steroid. The implication being that you should never be using steroids more than really 8 weeks, and even in some instances, that may be too long. 

Young: Okay. So, do you refill steroids, or do you just write? Because that's kind of my thing. If I wrote it and it's not well in 2 weeks, it's not going to do it. So, you don't need a refill. 

Payette: I personally try to use as little topical steroid as possible, not even just for this space, but just in general, because we just have so many more eloquent therapies now. If I do write it, I typically write the small tube, like a 15-gram tube. I'm not going to write, "Here's your pound jar of triamcinolone." I'll use it mostly for either rescue therapy, or sometimes I'll use it for diagnostic information because if I'm really struggling with something, the biopsy came back—there's an old joke about garbage in, garbage out—and you get this thing, it's psoriasiform sponge with EOs, and I don't really know what to make of this. 

Zampella: What is this? 

Payette: Sometimes I'll just use a topical steroid for 2 weeks as a diagnostic tool to assess, is this inflammatory or not? 

Zampella: That's fair. 

Payette: The other thing I think, to wrap this section up, that is really also important, is there is a tendency—and I'm not saying here, and certainly not with maybe some of our peers—but there is a tendency, for people who've been seen by an outside provider and carry a diagnosis in their chart, that when they now seek a new provider, they review that patient history, it says history of psoriasis, and it gets automatically translated over. I see this with my medical assistants all the time because it's so easy to just pull forward the information. I think it's really critical, and I teach my students and residents to do this too, is never assume that the previous diagnosis is accurate. You always have to start fresh. You can have that information in your mind, but you should basically close that note, set it aside, and approach this patient as if you have no history whatsoever. 

Admani: Yeah. That's something that really could happen to any of us. It often takes time for a disease to declare itself. So, it's not that the previous provider did anything wrong. We just didn't know yet. I think, going back to steroids, I do use steroids quite often. It's not the only thing that I use, but I do use topical steroids. I think the way that you prescribe it, the quantity should reflect the disease and how much you need them to use, right?  

Young: And the body part. 

Payette: And the body part. Yeah. 

Admani: So, for genital only, small amounts, definitely. I also limit the number of refills I'll put in because if they're requesting more medication, that's a sign for me that they need a follow-up. The challenge, though, is they will sometimes then go to their primary care doctor or someone else, and they'll just keep prescribing the same thing because they're also... 

Payette: Or they'll go to urgent care. Yep. 

Admani: Yes.  

Young: Yeah. Primary care, there's a big push for them to take care of more things. So, if dermatology sets the plan, then they'll just keep going with it. We see it a lot, having friends or relatives that are in primary care that say, "Y'all started it and it's cheaper.” They don't have to pay, especially the copay. So, we keep going. You have to make sure you say, "If I prescribe that, I don't want anybody else to refill it or anybody else to stop it without me being aware of it.” 

Admani: Yes. I set a limit. I usually tell them that if you're not better after this number of days or weeks, that is your sign to come back to me right away, just so that they know they have some precaution and they understand that I'm not just giving them something that is safe to use anytime and anywhere. 

Zampella: I think our next session is going to be on treatment. So, I think we could dive into this a little bit more, but I actually did want to pick up on one last point that Mike made. Topical steroids—I use them for many things, even in the genitals. We worry about atrophy and stuff, but think about your patient who has asteatotic eczema, and the last dermatologist gave them a pound jar of triamcinolone. They come in, you're like, "How long have you been using that?" And they're like, "Oh, every day for the last 2 years." And they don't have atrophy, right? They're like, "It's fine." But that's not the case in the genitals. 

The genitals… that intertriginous space is exceedingly sensitive to the atrophic component, or side effect, of topical steroids. You mentioned a case, but I had 2 cases of this last week of young men who came in with striae in the groin, and the striae are permanent, right? There's no going back from that. So, I think that's actually a really, really important point, especially when it comes to genital disease.