Meeting the Challenge of Maintaining Psoriasis Treatment
“Welcome to this episode of Psound Bytes™, a podcast series produced by the National Psoriasis Foundation, the nation’s leading organization for individuals living with psoriasis and psoriatic arthritis. In each episode someone who lives with psoriatic disease, a loved one or an expert will share insights with you on living well. If you like what you hear today, please subscribe to our podcast and join us every month at Psound Bytes™ for more insights on understanding, managing, and thriving with psoriasis and psoriatic arthritis.”
Shiva: My name is Shiva Mozaffarian and welcome to a new year of Psound Bytes episodes! We’re starting 2023 with a discussion about treatment adherence and why it’s important with the world’s leading expert on this topic, dermatologist and skin pathologist Dr. Steven Feldman. Dr. Feldman is a Professor of Dermatology, Pathology and Public Health Sciences at Wake Forest University, School of Medicine, as well as the Director of the Psoriasis Treatment Center at Wake Forest Baptist Medical Center in Winston-Salem, N.C. He’s also a member of the Medical Board of the National Psoriasis Foundation and in 2019 received the Foundation’s Outstanding Educator in Psoriatic Disease award. In his practice, Dr. Feldman discovered a need to promote medical adherence to improve treatment outcomes, and as a result, initiated studies that have revolutionized how he and other dermatologists’ practice. Let’s explore the issue of treatment adherence with Dr. Feldman and hear what tips he can offer to help you improve your treatment outcomes.
Welcome Dr. Feldman! It’s always a pleasure having you on Psound Bytes™. The World Health Organization defines adherence as the “extent to which a person’s behavior from taking medication, following a diet or implementing lifestyle changes corresponds to the agreed recommendations from a healthcare provider.” Do you agree with this statement and if so why or why not? And how does treatment adherence differ from treatment compliance?
Dr. Feldman: I agree with this statement completely because what is adherence, we're talking about the extent to which a person takes the medicine, and this definition makes clear that it's agreed upon recommendation from a healthcare provider. So we want patients and doctors to agree on what the plan should be and then we're asking how well is the patient following that plan. Treatment adherence differs from treatment compliance just in the wording. I think the bottom line is that we're trying to capture the same information - how well a person takes their medicine. But compliance sounds bad to some people because it sort of implies that the doctor is telling you what to do and you must comply with the treatment, which is not really what we're trying to get at. We're trying to get at the doctor and patients have agreed that this is the best course of treatment, and now how well does a patient do it.
Shiva: So given your expertise in this area, I'm sure you have lots of stories to tell. Can you provide an example about treatment adherence that describes some of the issues we're discussing today?
Dr. Feldman: Yeah, let's just start off right with the mother of all compliance problems, the treatment of scalp psoriasis. For the first 12 years that I was a psoriasis specialist, I could not get anybody’s scalp to clear up. I tried everything. I tried the topical steroids, the topical vitamin D analogs, tar products, anthralin, which is incredibly messy and stains everything (even your bathtub). I went to meetings to hear doctors talk about combination therapies with a combination of a steroid tar and salicylic acid all-in-one. I have patients use it to make medicines penetrate through those thick, scaly plaques. That wasn't working so I heard doctors talk about it, how they used antimicrobial treatments, antibacterials, and antifungals to get people’s scalp to clear but nothing worked. And then I realized patients weren’t putting the medicine on. I would tell them here, do this really horrible, messy thing that I wouldn't be able to do once. And I tell them here do this every day. I'll see you back in two or three months and they come back and say, doc, this doesn't work. Let's try something else. I try something else. Nothing made me feel more inadequate as a dermatologist. Then I figured out, hey, it's not that scalp psoriasis is resistant to treatment. It's not the medicines can't penetrate through the scale. The scalp has some poor barrier function and disease skin has even worse barrier functions. Medicines go right in if you put them on. The problem is with all that hair in the way, patients don't put them on. Patients aren't great at taking pills. They’re worse at rubbing creams and ointments on their elbows and knees. Getting them to put stuff on the scalp is the worst. So then once I figured that out, I made it really easy for them. I told them here, let's use this really non-messy product. Instead of giving them a greasy oil, I use the clear liquid solution that would go on easily. And I tell people you have to use this with the help of a friend because it's like getting your hair colored. It really is a two-person job and it doubles the chance you'll have a really, you know, attentive person involved who will really stick to use of the medicine. And then I tell people it's just for three days. I'll see you back in the office in three days. They come back in three days. They were dramatically better. Then I thought, well, maybe I don't even need to make them come back in three days. So I tell people I'll see you back at three days. No, wait, gosh. Then you have another copay. Have to miss work. Tell you what, here's my cell phone number. Call me in three days. They call me up and say “You’re right! Worked like a miracle. I'm like, 90% better already.” So this condition that dermatologists think of as being extraordinarily resistant to treatment is actually one of the most sensitive and easiest forms of psoriasis to clear up. If you get patients to use the medicine well, and I'm not blaming the patients, what I was doing as a doctor was really stupid. Telling people “here do this. I'll see you back in two months.” I mean a piano teacher's never going to tell you “here, here's your sheet music. Practice every day I'll see at the recital in two months”. Nobody would. I'm not even gonna hire a student to work with me for the summer and say, here's your project. Work on this every day. I'll see you at the end of the summer. No, no matter what, I'm gonna meet with them once a week. And so the things that we doctors have been doing to get people to use their medicines, it's just been really dumb when you think about it.
Shiva: And Dr, Feldman, just how bad is adherence to psoriasis treatments? Is it the same for psoriatic arthritis or other diseases? I can imagine it's hard to maintain and you’ve already mentioned some difficulty with topical treatments.
Dr. Feldman: Oh my god. Dermatologists apparently thought that you could just write a prescription for topicals, and the patient would do it like they were some kind of test tube in a lab. They don't do it. There was this phenomenon of called tachyphylaxis where you give people a topical steroid and it would work at first and then gradually it would stop working. And dermatologists thought, “Ohh, it's because the more you use it, the less it works.” But actually it's the less you use it, the less it works. I got into this when a research colleague, Raj Bell Krishnan, told me about a company that made these medicine bottle caps that would record the day and time people open and close the bottles. They were designed to measure the early AIDS treatments. The early treatments for HIV infection involved taking medicines five times a day and people were like, can people do this? And so they invented these caps, it would record when people open and close the bottles. And the first study I did was to put some topicals in one of those and give them to psoriasis patients. And we told patients here, put this on twice a day, we're gonna monitor your use. So fill out this daily diary and bring the bottles for us to weigh. We didn't mention the computer chips. In the diaries, the patient said, yeah, I'm using it regularly and the computer chips said they're not using it and their use went down very quickly over the first month of treatment. Now, that first study was two months long. We did a year-long study with topical steroids and on average, I think maybe one in six people were applying the medicine on any given day. The adherence was terrible. And again, I'm not blaming the patient. Sometimes the psoriasis got better, so they stopped using the medicine. Sometimes putting the greasy ointment on may be worse than the disease. But mostly I blame myself because if I tell people, here, do this, I'll see you in two months. That's just not a realistic thing. But if I tell the patient here, do this and let's talk again in one week and see how well it's working for you. I think they're much better about using the medicine, and once they see that, it works well. I think they'll use the medicine when they need it. I don't think it's realistic to get people to put topicals on their elbows every day for the rest of their lives. But I think it is realistic to get them to use a topical medicine when the disease is flaring up and then when disease goes away, maybe they take a break and if it starts coming back up, they can put a little more of their topicals on.
Shiva: So let's talk about some of the factors that impact maintaining treatment. Can you address what some of those factors may be?
Dr. Feldman: Gosh, you know, there's a lot of things that are talked about with some side effects and how well the drug’s working and whether it's affordable, how complex the treatment regimen is. Those are the usual things and they’re obvious. Let's talk about some of the things that really make a difference that are maybe not so obvious. Number one is packaging. You're like, packaging? How does that matter? When birth control pills came out in the 1960s, they came in a bottle, and they didn't work very well. They were getting pregnant. Then they discovered if you put them in a blister pack that says you take this pill this day, this pill the next day, people knew whether they've taken the medicine. So they didn't overtake, they didn't undertake, and it dramatically, dramatically improved the effectiveness of birth control pills. So if you're on a pill medication, I would say get it out of that bottle and put it in a seven-day pill thing. Fill that seven-day pill thing every Sunday morning and that will help you know that you took your medicine that day. Also sometimes you might take a pill and then like 30 minutes later, if you're my age, you might go, gosh, maybe not even 30 minutes, maybe 5 minutes later, did I take it or not? I better take another one just in case, you know, it'll prevent you from doubling up. I think packaging is an enormous practical thing you can do. The other practical thing you can do is what I call triggers. I'll give you example of this. I developed foot fungus on my feet and needed to put topical antifungus medicine on my feet. I could never remember to put the medicine on because my normal habit is to put my shoes and socks on in the morning and then I would see the antifungal cream and I'd be like I'll do it tomorrow because I'm not gonna take my shoes and socks off. I discovered all I had to do was move the cream on top of my socks in the sock drawer. And then I always saw the cream before I put my socks on. And I never forgot to use it and I cured my foot fungus. So if you can put your topical therapy or put whatever treatment is somewhere in your life that you have to go through that treatment to do what your normal next step of the day is, it could vastly improve adherence to the treatment.
Shiva: So you mentioned side effects. How do you approach someone who is fearful of side effects associated with taking medications that are not natural products? And how do you frame the risks versus benefits treatment discussion?
Dr. Feldman: Yeah. Well, to me everything is a natural product. I mean, Walgreens, CVS, it’s all part of nature. I think, there are two ways to deal with side effects fear. One is a mathematical way. If I tell a patient, you have a 100 chance of developing a side effect, it's absolutely terrifying because the human brain is going to think about what it's like to be that one and go, oh, I know it's gonna be me. And it's just gonna take over the whole brain with that thought like a balloon blowing up inside the cranial cavity. So I had a patient who had horrible psoriasis. Wouldn't take any of the biologists because he thought they caused liver disease. Now they don't cause liver disease. I can't tell him there's no chance you get liver disease because anybody could get liver disease. But I said, What if there's only one in 1000 chance? He said “no, I wouldn't take it. I had a relative who died of cirrhosis. He said “I wouldn't take the risk.” So I said to him, I understand. Listen, what if I had a different one where 99 out of 100 don't get cirrhosis. Would you take that? He said, “well, yeah, sure”. Now 99 out of 100 not having the risk is 10 times more risky than one in 1000 getting this. But it sounds betters 99 out of 100 because when you hear 99 out of 100 don't have the problem, you think you're gonna be one of the 99. And so if you're trying to put your mind at ease instead of thinking about 100, think about 99 times out of 100 doesn't happen. The other thing to do that I do as a physician that I think gets people over risk is to forget about the numbers altogether. People, their brains aren't designed to work on numbers. They're designed to work on the basis of stories. If I tell the patient, you know you remind me of another patient I had. Their psoriasis was so similar. They did really well on drug X. That one story has almost no information in it, but it's extraordinarily reassuring. And I have like a personal proof of this. I developed severe sciatica back pain from a slipped disc. The pain was so severe I couldn't sleep at night, so I read all the research on sciatica and that research proved beyond any shadow of a doubt that the best thing I could do for my back was physical therapy. I went into work and ran into one of my partners and said, Steve, I had a problem with the disk, saw the neurosurgeons they put me on prednisone. I felt better right away. So here I am, the nerdiest person you've ever listened to, and I’ve read all of the data proving I should do physical therapy and I have one story from a partner who says he did well on prednisone. Not surprisingly before the day was over, I was on Prednisone. So yeah, I think one story of one example of 1 patient who did well can overcome a lot of that fear.
Shiva: So earlier you offered up some tips. Do you have any other tips to help reduce the burden of treatment?
Dr. Feldman: Yeah, you gotta let the doctor know what is bothering you about treatment. So the doctor wants to give you an ointment and you think ointments are too greasy and you're not going to put it on. Make sure you make clear that “hey, doc, I need something less messy than that”. We've got creams, gels, sprays, shampoos, all kinds of things that are much less messy than the greasy ointments. If you don't mind using the messy ointment, great. But there are less, messy products available to you. Also if the doctor thinks you need a complex regimen of a steroid and a vitamin D, maybe a combination product that has both of them in one tube would be helpful to reduce that treatment burden. Also finding things that are maybe once a day instead of twice a day might be helpful. I think all of those things, are valuable to reduce the burden. Also cost can be a burden and one of the things I would do is I'd just get online and go to Good RX com. Make sure that I'm getting the lowest price option. And make sure that the doctor understands that you're concerned about the cost of treatments.
Shiva: Discussing costs up front is so important. So that brings us to how important the doctor-patient relationship is in adherence. What can be done to improve communication from both points of view?
Dr. Feldman: I think the doctor-patient relationship has to be one of the most important things in adherence for two reasons. One, I think patients need to trust the medicine if they're going to use it and they don't trust drug companies and we don't trust the insurer and they don't trust the drug. They're gonna trust their doctor to make a good decision. And so if they have trust in the doctor based on a good relationship, that's gonna affect adherence. And the other thing that's going to affect adherence is the patient who wants to please their doctor I think is going to use the medicine better. When do people floss their teeth? Right before they go to the dentist. When are patients reliable about using their medicines? Right before they see the doctor. That social interaction between the patient and the doctor has an enormous impact on adherence. What can be done to improve communication? Well I think doctors should be asking patients for feedback. Some years ago I started a doctor rating website that served as an inexpensive way for doctors to get patient satisfaction information and that way you can tell whether as a doctor, you're doing the things that patients want. And as part of that doctor rating website, one of the things we had on that site was a small book that patients could download. It is described things they could do to help their interaction, their relationship with patients, like making a problem list, putting the most important problems at the top of the list and being able to share that with doctors, making sure that you not only have a list of the medicines you're taking, but actually bring your medicine to doctor office visits. I'm embarrassed the last couple times I've been to my doctor, I didn't bring my pills with me. I really should have. I should know better.
Shiva: And how do you approach the patient who seems to have given up on finding the right treatment for their psoriatic disease?
Dr. Feldman: Ohh well that would be a shame. I want them in my office. Come see me because the treatment is now and there are so many good treatment options. Ohh my goodness and you know even for patients who fail some of our best biologics, maybe a combination of things will work very well. So at this point gosh, I wouldn't I, I haven't given up on anybody.
Shiva: I think they do need to go and see you.
Dr. Feldman: Yeah, they could see me. They could see any of the many dermatologists who are devoted to giving patients great care. And if you have any doubt, one of the things you can do is you can go to the National Psoriasis Foundation website and use its Doctor Finder tool and see doctors who've gone out of their way to show that they want to see psoriasis patients in a listing of the kinds of treatments that those doctors offer.
Shiva: Right. Our Patient Navigation Center can also help someone locate a dermatologist near them. Dr. Feldman, as you know, many people living with psoriasis see a broad team of health care providers. In addition to their primary care physicians, they may see a dermatologist or a rheumatologist, and sometimes they see a physical therapist and other providers. What can be done to help improve communication between providers to truly collaborate and improve treatment outcomes?
Dr. Feldman: I think providers could share each other's cell phones and so they know they'd be able to get a hold of each other very quickly. One of the things I often do is put my cell phone number in the note to the pharmacy section of any prescription I write because our pharmacy colleagues, they may have advice for patients, so they may catch an error that I made. I want them to be able to reach me immediately in order to coordinate such care. I don't know that you're going to be able to get your doctor's cell phone number to share it with another provider. But it certainly helps to tell your dermatologist who your rheumatologist is so that the dermatologist can send a copy of the office notes automatically to the other doctor.
Shiva: Right and sometimes it helps to write your health care team down on one sheet and provide that information to each provider. That’s another tip.
Dr. Feldman: Yes, that's brilliant.
Shiva: And is race or ethnicity a factor in treatment adherence?
Dr. Feldman: Possibly, but I think being human is the big factor in treatment adherence. Human beings are complex and boy human behavior is affected by so many different things. I think race or ethnicity is probably only a small factor in treatment adherence.
Shiva: And Dr. Feldman, what can you tell us about your research in treatment adherence? What are your plans for the future in this field?
Dr. Feldman: I've done little studies where we've measured patients’ adherence to topicals. Long-term adherence to topicals and the adherence is abysmal. Adherence to pills, we've looked at that. That's a little bit better. Adherence to injectables better, but still not great. I don't know that I need to do a lot more research on how poorly the medicines are used. I think the research now really needs to focus on what we can do to get people to use medicine better. I look for every possible little wrinkle or tool I can find to boost things up and try to test those in as real life of setting as I can because it's one thing to say, you know, I think this will improve adherence, but if you have some data to back it up, I think it encourages other doctors to incorporate that into their practice.
Shiva: I think creating awareness like what we're doing today is part of that as well. Having people recognize that this is an issue and perhaps there are ways they can look at treatment adherence differently. So thank you, Dr. Feldman, for framing what treatment adherence is and what can be done to help improve treatment outcomes. Do you have any final comments to share with our listeners today?
Dr. Feldman: Yes. Well, if you're listening to this you are already utilizing a National Psoriasis Foundation resource and I love the National Psoriasis Foundation resources. One of the great things about the National Psoriasis Foundation is it encourages patients to be adherent to the recommended treatment regimen. And if there's anything about the treatment regimen that they don't like to share that information with their doctors. The Psoriasis Foundation has so many other useful tools for patients. It empowers you to reach out to your congressman and to affect legislation that impacts the lives of people with psoriasis. It empowers you to have a voice with insurers, with drug companies to make new products available, and not the least of things, are the many ways the National Psoriasis Foundation helps educate people about their treatment options.
Shiva: Thank you Dr. Feldman for your support. What a wonderful way to end today’s episode. It’s always a pleasure speaking with you about the topic of adherence.
Dr. Feldman: Thank you so much for including me today. It's been a pleasure.
Shiva: For more information about how to take an active role in your healthcare contact our Patient Navigation Center by email at firstname.lastname@example.org or calling (800) 723-9166, option 1 today.
We hope you enjoyed this episode of Psound Bytes™ for people with psoriasis and psoriatic arthritis. If you or someone you love has ever struggled with psoriatic disease, our hope is that through this series you’ll gain information to help you lead a healthier life and inspire you to look to the future. Please join us for another inspiring podcast. You can find this or all future episodes of Psound Bytes™ on Apple Podcasts, Spotify, iHeart Radio, Google Play, Gaana, and the National Psoriasis Foundation web page. To learn more about this topic or others please visit psoriasis.org or contact us with your questions or comments by email at email@example.com.
This transcript has been created by a computer and edited by an NPF Volunteer.
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