Activity Transcript

Amit Garg, MD: Hello. My name is Dr. Amit Garg. I'm professor of dermatology at the Zucker School of Medicine at Hofstra/Northwell in New York. Welcome to the program titled, Understanding the Impact of HS on the Lives of Patients. Joining me today are Dr. Joslyn Kirby, who is an associate professor of dermatology at the Penn State Milton S. Hershey Medical Center in Philadelphia, Pennsylvania, United States. Also joining us is Dr. Kelsey Van Straalen, who is a postdoctoral researcher at the Erasmus University Medical Center in Rotterdam, The Netherlands. Welcome to the both of you.

HS is a chronic and often debilitating inflammatory disease. HS patients, on average, experience a delay of up to 10 years between symptom onset and diagnosis. Even after the diagnosis is made, there may not be a complete appreciation for the many ways HS impacts the lives of patients. Let's start today's discussion by exploring the epidemiology of HS. Kelsey, what can you tell us about the prevalence of HS?

Kelsey van Straalen, MD, PhD: Well, from multiple studies around the world, we know that the prevalence estimates for HS range from about 0.1 to 1.7% in the Western population. Registry-based studies often report a slightly lower prevalence than self-reported studies using a validated questionnaire.

However, studies have also shown that there are differences in the prevalence of HS between different ethnicities. Registry data from the US has demonstrated that the prevalence of HS is about three times higher in African-Americans and about two times higher in biracial patients than it is in White patients. Moreover, recent studies from Asia have shown that the prevalence in Asian countries lies at the lower end of this spectrum, for example, a prevalence of about 0.2% in Taiwan and a prevalence of 0.06% in Korea.

It is also well-recognized that HS disproportionately affects women in the Western world, with a female to male ratio of about 3 to 1. However, recent studies from Asia have shown that in those countries there is more often a male predominance of HS.

It is likely that the differences in these prevalence estimates between these ethnicities are due to differences in lifestyle factors but also genetic predisposition, as we see that Western patients often report a family history -- at least more frequently report a family history -- than patients from Asian populations. Nonetheless, prevalence estimates that I have told you are likely to underestimate the real global prevalence estimate of HS, as HS still remains a frequently underdiagnosed and misdiagnosed disease.

As previously mentioned, the average time to diagnosis for HS is about 10 years. During that time, HS progresses into more severe disease, patients develop more HS-associated comorbidities, which together lead to increased work disability and psychological impact of this disease. Overall, the HS prevalence around the world is about 1%, disproportionately affecting women and people of color.

Dr Garg: Thank you, Kelsey. So Joslyn, we've talked a little bit about the delay and diagnosis aspect of the disease, meaning delay between onset of symptoms and when a patient actually receives a diagnosis. Can you help us understand the experience of the patient in those 10 years?

Joslyn S. Kirby, MD, MS, MEd: So we have some studies that I think speak to that. And the best analogy that I've ever gotten came from a person with HS who described their experience as it's like a roller coaster. So this is a chronic condition with acute flares on top. And our goal in management is to try and take that roller coaster and make it a little more flat. So it goes from a roller coaster to a train track. So it's just a little easier to know what your life is going to be like and what you can expect as you make plans in your life.

So what we know is that patients, because of these flares which are intensely painful, often go to acute care settings. So that's going to be an emergency department, it's an urgent care. And that's in part because a primary care doctor or a dermatologist might not have after-hours and weekend care, or they haven't even gotten the diagnosis yet so they don't know to go to a dermatologist.

So we know that people with HS compared to people with psoriasis and compared to people who don't have either one of those things, they have a much higher use of going to an urgent care and an emergency room. They're also maybe in that setting likely to be misdiagnosed with having cellulitis and need hospitalization.

So we also know that people with HS tend to be hospitalized more frequently compared to people with psoriasis and people who do not have either condition. And I think the challenge here is that these might be places where we're not looking at long-term treatment. It's taking care of that episode but not getting people on the medications or developing a management plan that really takes the roller coaster and makes it so they don't need to go to an urgent care or they don't need to go and be hospitalized again. So maybe lower value and potentially very high cost. And that's concerning just because medical care is one of the top reasons for personal bankruptcy.

Dr Garg: Yeah, and we hear this story time and time again. When we evaluate patients, they talk about fragmented care, bouncing from one doctor to another, in and out of emergency departments, sometimes also hospitalized for several days at a time. And unfortunately, probably also along the way some inappropriate treatments for the disease. And so the journey itself is complicated during those 10 years for HS patients. Our utilization and costs and care of those patients is higher.

It also kind of, I think, speaks to the importance of understanding the role of dermatologists for these patients, ideally identifying and recognizing the condition early and engaging them in a therapeutic relationship with dermatologists so that when these roller coaster issues come up, there's another pathway besides the emergency department to be able to seek that care.

Joslyn, let's delve into the impact HS has on patients' lives. What can you tell us about this burden?

Dr Kirby: Thanks, Amit. I think Kelsey did a great job of helping us understand that HS is not as rare as we thought. But these patients have disease for years before they come to see us, and during that time, the biggest problems that they have are pain, pain, and more pain. But also for the providers out there, please don't underestimate the impact that drainage from HS lesions can have, the odor that comes from the drainage from those lesions, and even the impact of itch and fatigue. This is a really ... can be a devastating disease for patients.

And it's the symptoms of the disease that contribute to impacts on quality of life, everything from can they sit in a car to make it to an appointment or make it to work; can they pick up their child to take care of them; what clothing is going to feel comfortable; what clothing is going to cover the disease so they don't get questions or drainage isn't visible. This disease really impacts every aspect of patients' lives from the time they wake up till the time they wake up again, since HS can have an impact on sleeping even.

And so the localization of this disease to places that are "hidden" really doesn't diminish the impact on quality of life. So I think it's really important to realize that while this is a condition that happens under the arm, in the groin, on the breasts, places that are typically covered with clothing, that does not mean that it's less impactful. It's still incredibly impactful. And people still have a real concern emotionally, socially, that a scar may be visible, that drainage may be visible on clothes. So even the aspect of covering it is always on people's minds.

I think that, again, the impact of HS, when you talk to your patients, realize that it's both physical, but also mental and social. And I think that, Amit, you led us in a really great project which really was meant to globally assess the impact of HS on patients and some of the gaps that we still have yet to address -- and this is the VOICE project. It was a global survey project that assessed adults with HS, men and women, multiple different races, again, from around the country.

And I think that the things that for me really hit home from this project is going back to Kelsey's point, there is still a mean delay of 10 years for these patients. And that means that they've had 10 years of maybe getting misinformation or of being frustrated by treatments that don't work and not having a name for their condition.

Their quality of their treatment, not surprisingly in this project: they're dissatisfied. They would really like efficacious treatments, as well as safe treatments. Symptom control leaves something to be desired. About 46% -- so that's about 4 or 5 out of 10 of our HS patients -- they don't feel like their disease is satisfactorily controlled. They're dissatisfied, the impact on their quality of life. For many of our patients, 4 out of 10, extremely affected their quality of life, their HS. And many, we'll talk about comorbidities in a little bit, have comorbid conditions that are due to their disease, like depression or anxiety.

One of the last points I think is important, which is the impact on work, because for so many of our patients, their ability to get care for this disease means having insurance. And if you have trouble going to work, there's a chance that you lose your job. And we know that about one out of 10 patients actually is unemployed and maybe due to their HS. So having a job, having insurance means you get care for your HS so you can continue to have work so you can continue to have insurance.

But those patients, in addition to having issues of being able to show up for work, there's also challenges of presenteeism, which means: are you able to be engaged the way you would like while you're at work? And we know that many patients, about half of them, have issues with: can I concentrate when I want to? And it's easy to imagine being distracted by the pain or the itch or the concerns about drainage and odor with this condition.

I mentioned that the symptoms of HS can greatly impact people's functions during the day but also really impact their ability to sleep. And I don't know about you, but I need some sleep to help me get through the day.

HS and sleep. Not only during the day is pain making an impact on people's bodies -- and itch -- but I would say don't take for granted that the pain and sometimes the itch that seem so common during the daytime are making an impact for our patients at night. And this is a study that looked at over a hundred patients with HS and really showed that not only are they having difficulty getting to sleep, but also staying asleep. And their activity or restlessness during the day is also a lot greater compared to people who do not have HS. Their scores for sleep disruption and impact are higher, meaning that they're more negative, again, compared to people without HS.

Putting this in another way, rather than comparing mean score differences, I think it's even more important to think about the percentage of people who are having disrupted sleep. And for people without HS, it's about 20% to 22% in this study. Whereas the people with HS, it was greater than 70% of people who had disrupted sleep. And that was correlated more due to the pain of their HS rather than itch. Another really important reason to control people's HS pain and their symptoms is, again, not only the daytime impact but also the nighttime impact.

Now, another important reason to get some sleep, and again, maybe you already knew this like I did, was because it can impact more than just being able to get through your day. It's everything. Studies related to sleep have shown that people who are not getting adequate sleep, it impacts their emotions and their physiology. It can contribute, maybe, to changes in our immune system. But the best data show that it increases the risk of anxiety, of depression, but also hypertension and all of the aspects of metabolic syndrome. So greater BMIs in people who have more sleep disruption, greater cholesterol, greater risk because cardiovascular disease as well as stroke. So another reason to manage HS, because those things are already in greater risk for people of HS, maybe due to inflammation. But also other factor of sleep, maybe contributing to some of these comorbidities in addition to the HS and inflammation.

Now, one of the other things that we talked about was this roller coaster of HS and these flares that happen sometimes out of nowhere. But also sometimes the challenges our patients have getting their disease under control, finding the right long-term management to control this inflammation. One study also looked at the impact of hospitalizations and the rehospitalizations that people with HS frequently have. And this is a more and more important part of managing HS, is getting people under control for the long term. Because going to an emergency department and sometimes being hospitalized are not really the best places to take care of people with HS is it's high cost, but not always high value.

And so this is a study looking at readmission rates. And maybe it's been a little while since you thought about heart failure, but it's something that a lot of our colleagues in other disciplines think about. And it's really known to have high readmission rates, so to compare HS to a condition like heart failure and see that their readmission rates after a hospitalization for HS are not different from people who have something like heart failure is a very significant finding and really speaks to the opportunities that we have to recognize this roller coaster ride that people are on and to work with them to really tame it, to get them on a treatment that works for them over the long term, rather than treating episode by episode.

Dr Garg: Kelsey and Joslyn, through the application of big data, we've also been able to appreciate more about HS as a disease with a number of systemic features. Can you talk to us a little bit about the comorbidity burden in HS?

Dr van Straalen: Yes. Well, we know that HS is associated with several different comorbidities, ranging from other immune-mediated diseases such as inflammatory bowel disease, rheumatic diseases, through cardiovascular disorders. But also, what Joslyn already stated, psychiatric disorders originating from the disease, such as depression and anxiety. We know that HS is associated with a 2-fold higher comorbidity burden than the general population. And together these comorbidities make the impact of HS even more severe. Joslyn, maybe you can tell us also something more about the specific comorbidities?

Dr Kirby: Yeah, absolutely. And I like that rule of thumb that you mentioned. I generally hold about the number 2 to 4 times higher in my head for people with HS compared to people without HS. So for so many of the comorbidities, their risk is about 2 to 4 times higher. So you mentioned inflammatory bowel disease. That fits that rule of thumb, about somewhere in the range of 2 to 4 times higher. Endocrine disorders, polycystic ovarian syndrome risk is about 2 to 4 times higher. Metabolic syndrome, obesity. And its risk down the road of cardiovascular disorder's about 2 times higher.

And then mental health disorders. This is the one where if you are going to think about screening for something, what's the most frequent comorbidity, the most common one or most prevalent, it's actually going to be the mental health disorders. So depression is actually the most frequent of the comorbid conditions affecting anywhere from 4 out of 10 to 6 out of 10 people with HS, with anxiety happening a little less frequently, but still in that range of about 2 to 4 times higher.

Dr Garg: Yes. Thank you. I think this information is really important because it really helps us establish really a different framework in thinking about how to comprehensively care for HS patients. Identifying comorbidities and managing them early, we think, can have a significant impact on the overall health and of course the lives of HS patients. Kelsey, what are habits and lifestyle issues that may have an influence in HS?

Dr van Straalen: Well, the main lifestyle factors associated with HS are obesity and smoking. Obesity is a well-established risk factor for HS in the Western population, with about 50% of patients being obese. Obesity rates are generally lower, but very high in the Asian populations, ranging from as low as 12% to about 50%. Not only is obesity common in the HS population, a higher body mass index is also positively associated with a higher disease severity. And a decrease in disease severity has been described after significant weight loss following bariatric surgery. Moreover, in a long-term follow-up study, non-obese patients were shown to be nearly 4 times more likely to achieve self-reported disease remission than obese patients after a median follow-up of 22 years.

In addition to obesity, the association between smoking and HS is also well established, with up to 90% of Western HS patients being current or ex-smokers. A large medical database analysis from the US has shown that smokers have nearly 2 times the risk of having HS compared to non-smokers. Smoking rates in Asian populations are generally lower and range from about 30% to 70%.

A long-term follow-up study found that non- or ex-smokers had nearly 3 times higher chance of self-reported disease remission compared with currently active smokers. This highlights the need for smoking cessation in HS. However, a recent study has also shown that there is overall low motivation among HS patients to quit smoking. And a most frequently reported reason was a fear of weight gain after quitting smoking. Overall, obesity and smoking are well-established risk factors for HS, and losing weight and quitting smoking has been associated with improved chances of disease remission in the long term.

Dr Garg: Kelsey, both smoking and obesity are such curious questions for patients with the disease, and certainly somewhat of a myth for doctors managing patients with this disease. Can you delve in a little bit more about the relationship between obesity and smoking as it relates to HS? Are they causal?

Dr van Straalen: That is a very good question. And the answer is that we don't actually know if they are causal factors for the development of HS. Many studies have shown a correlation and an association between obesity and smoking and HS, but causality is very difficult to show. And mainly because the majority of the studies done on, for example, BMI are done after an average disease duration of about 14 to 15 years, which is due to that very, very prominent diagnostic delay.

And of course, HS has symptoms such as pain, fatigue, drainage. All these factors can reduce people's physical activity and increase their need for smoking as well to relieve stress, for example, or anxiety. Meaning that these things lead to potentially a lack of physical activity, an increase in body weight, and an increase in smoking. So no, we don't actually know if these things are causal. And I guess that the relationship is going to be very complex, and we haven't fully elucidated it yet.

Dr Garg: Yeah. That's a great point. We may, at some point, begin to appreciate that either or both tobacco smoking and obesity play a role in triggering the disease. But I think one thing we can all be clear on is that even if there is that relationship, we know there are a number of other factors, some known and some totally unknown to us to date, that are likely involved in the disease trigger. And so the direct influence of either of those on disease onset is still unknown.

Kelsey, we've heard that pain is such a prominent symptom and really feature of the disease. Can you talk a little bit more about strategies around management of pain for HS patients?

Dr van Straalen: In addition to these lifestyle factors, we also know that HS patients have a higher risk of substance abuse, with substance abuse reported in 4% of patients compared with 1% in controls. Among HS patients, opioid use and alcohol abuse are the most frequent forms of substance abuse. HS patients have about one and a half times greater risk of developing chronic opioid abuse compared with controls. Both alcohol abuse and chronic opioid abuse are most likely a result of the disease impacting patients' lives. It can be a result of the pain patients experience, but also it could help relieve anxiety and depressive symptoms that patients feel.

Dr Garg: Joslyn, these are both highly sensitive topics for patients. What can you tell us about the importance of having a good doctor-patient communication with HS patients as part of that therapeutic strategy?

Dr Kirby: It's absolutely crucial. So what I try to keep in mind every time I walk into a room with a patient with HS is that for probably a good period of time, anywhere from 3 years to 12 years, they've been experiencing this condition and maybe didn't get a name for it, or didn't have a sense that they were getting treatments that were working for them. So I think for us to recognize that when we go into these rooms, very often our patients have felt like they were having poor communication with their prior providers. They've developed a distrust of us as clinicians, in part because the disease is really frustrating.

And I think there's a growing awareness of HS, but there's real need for us as dermatologists to help all providers recognize this disease so people have their experience validated, they get diagnosed and they start on treatment. So that was a long way of saying, when you walk in the room, I tend to ask people, what do you know about your disease, and what's been your experience with treatment?

And then, to Kelsey's really good points earlier, we know that there's comorbidities that go along with this condition and there are challenging things like smoking cessation that we probably are going to want for our patients. But my first rule is I try not to bring it up on the first visit. It's really hard to make changes in exercise routines or to stop smoking or diet when you're in chronic pain. These are patients who can barely get on pants, let alone pick up an exercise regimen. So let's get people under control and let's let them know that that's our goal.

And then I tend to talk to them about how, as a dermatologist, I feel like I'm the person I want managing their HS. My colleagues, we know these medicines, we know the procedures that can help this condition. But I let them know I need the help of other providers to manage the pain that isn't going away with disease-focused treatment. I need other providers' help to help with maximizing their general health. And that's a way of talking about smoking cessation and weight loss and diet changes. And I need the help of other providers to help us look for and potentially diagnose these comorbid conditions.

So establish rapport, acknowledge their experience, which may have been frustrating, but also take that into account as you move forward and let them know that you're there championing with them. You are their cheerleader, and saying, "You know what, we're going to try this, and if it's not the right thing for you, we have other things that we can try and use."

Dr Garg: Well, thank you both for this engaging discussion. I'd like to offer a few concluding statements on the topic. We may be underestimating the true burden of disease in HS, which disproportionately affects young adults, women, and at least in the United States, also Black patients. HS has a profound impact on the lives of patients across a number of domains. We also know that HS is associated with multiple comorbidities, which also contribute to this overall life impact. And in addressing all aspects of the disease with patients, it's essential to have established a strong therapeutic relationship premised on trust and on good communication.

Joslyn and Kelsey, I'd like to thank you for this great discussion. I'd also like to thank all of you for participating in this activity. Please be sure to continue on to answer the questions that follow and please complete the evaluation.

This is a verbatim transcript and has not been copyedited.