Psoriasis Podcast

Sage Advice on Psoriasis and Quality-of-Life Assessment

Steven R. Feldman, MD, PhD; Andrew Finlay, MD

Disclosures

April 05, 2022

This transcript has been edited for clarity.

Steve Feldman, MD, PhD: Hi. I'm Dr Steve Feldman, and welcome to Medscape InDiscussion. Today we're talking about psoriasis and the dramatic impact treatments have on our patients' lives. And we'll get to that shortly. First, let me introduce my guest. He pretty much single-handedly introduced concepts of quality of life in dermatology and he invented extraordinarily widely used instruments to measure our patients' quality of life — measures that are used in countless clinical trials. Let me quote him: "Every day in the dermatology clinic, there are people whose lives are being ruined by their skin disease. My main ambition has been to measure this impact to help dermatologists put the patient's perspective at the heart of clinical decisions." Let's talk to him about how skin disease affects patients and the implications for treatment. I'm honored to present to you Professor Andrew Finlay. Welcome, Andrew.

Professor Andrew Finlay, MD: Thank you very much, Steve. It's very kind of you to invite me along.

Feldman: Listen, I know you're retired, but I imagine you are keeping as busy or maybe busier than ever. I'm getting kind of old myself and I'm wondering what might be ahead of me? Tell me, what's retirement like or what are you doing? What have you given up that you miss?

Finlay: This is the very first time in my life that I've ever got my time management right. My life-work balance at last is right. I'm having a great time — really the best time ever. I'm having some proper time with the family, having a proper time with all my hobbies. I'm learning jazz piano. I'm keeping the garden nice. I'm sorting out a new little home we've got in London as well as here in Cardiff. And oh, today, we just got the first copies of a new book. I spent lockdown creating a new book, Dermatology Training: The Essentials, which is a British Association of Dermatologists book. And although you're right, I retired from clinical work about 12 years ago, I'm still doing some still quite actively involved in research and doing a lot on developing family quality-of-life measures. So, I'm having a great time, Steve. I thoroughly recommend it. And the sooner you retire, the better I would say.

Feldman: Your idea of retirement is that of an obsessive-compulsive workaholic. You're publishing as much as ever.

Finlay: I am, yes. And you kindly commented on a short article that we had in the British Journal of Dermatology last year about being addicted to publication or publishing. And I'm certainly an addict.

Feldman: Let's talk about psoriasis. When I see patients with psoriasis, I think about basing their treatment on the severity of the disease. How do you think about that? How do you think about different severity categorization schemes?

Finlay: Once when I was very, very early in my career as a dermatologist, I was asked to do a ward consult for a patient in the cardiology ward who just had a myocardial infarction. When they stripped off his clothing I could see he had very, very widespread psoriasis, probably a PASI of 40 or 50 or something like that. Absolutely huge. As a new dermatologist, I was very enthusiastic about the treatments we had. Frankly, they weren't that great at that time. But I persuaded this guy who wasn't particularly worried by his psoriasis to get on systemic therapy. What happened was this chap whose psoriasis was very severe, but in fact who his life was in total equilibrium with his psoriasis, he wasn't actually bothered by it at all. What I did was I upset the stability of his psoriasis with my intervention and created a nightmare for him. Previously, he was living perfectly well with his psoriasis. He wasn't bothered by it. And I weighed in and messed things up for him. So that's just an example of an inappropriate approach to somebody with psoriasis. You've got to listen to the patient and what the patient wants. But equally, and this is a message that has come from widespread surveys both in the States and across Europe, patients time and time again say their doctors aren't really taking their psoriasis seriously enough. They would prefer to be on more impactful and much more effective therapy.

Feldman: The patient whose balance you upset, was that from making his psoriasis better?

Finlay: No, what happened was that his psoriasis, instead of being stable, then started lurching between being more severe, being more inflamed and then periods of improvement. But the whole thing became a major thing in his life, whereas previously he was living with it quite successfully.

Feldman: So when we see patients, we've got to make a decision about treatment. What's better: to just use our clinical judgment and our wisdom or to use some kind of formal score?

Finlay: Being an old-fashioned clinician, I think clinical wisdom and judgment have got to be right up there. But to apply our wisdom and judgment, we need all the information. And if the only information you have is the appearance of the skin — the area that it's affecting, the sites that it's affecting — if you don't have the patient's perspective, you're not, in my view, fully informed as to make the best decisions for that patient. Understanding the patient's perspective is an additional bit of information. It's absolutely central to examine and, if appropriate, to measure the severity of somebody's clinical psoriasis in terms of their signs. But in addition, by understanding the patient's perspective, you get a much broader view of the real situation and your clinical decision-making is better informed. Often, it's better informed, pushing you more quickly into systemic therapy, for example.

Feldman: So we see a patient, we measured the objective disease severity. We assessed the body surface area. If we see that it's more than 5%, we're probably thinking, Okay, topicals aren't practical, so you'd record a body surface area and maybe, if you're compulsive, you'd record the average severity of the lesions, a global assessment of that. What patient information do I need? Do I just ask a patient, "How much is this affecting you?" Or should I use a formal measure like the Dermatology Life Quality Index (DLQI) that you created?

Finlay: I obviously have a biased perspective of the potential value of the DLQI, but as you suggested, asking a simple question is the most fundamental thing of all and probably is the simplest. And for those people who are not interested in using questionnaires, that is a very simple, fundamental clinical thing to ask as part of your history taking: How has your life been affected by your skin disease at the moment? If you can do that, and it doesn't take long to do it, you will be surprised very quickly by the answers that you get. And you'll also, I would guess, be surprised at how much knowing the information you get from that single simple question will help you make better decisions for the patient.

There are a whole host of reasons why using a more formal measure such as the DLQI — several others may be used — may also be helpful. In particular, it can jog you or reassure you into using a therapy which you might not otherwise have used. There can also actually be another side to it, which is just worth mentioning in passing. If you've got a DLQI score, for example, this can justify your therapeutic decisions if the patient then runs into some problems following the clinical decisions that you've taken. For example, suppose somebody gets severe side effects from a therapy that you've started patient on, the fact that you've measured the DLQI — you've got evidence that the patient's life was severely affected — might be helpful. That's just another facet.

Of course, having a score is helpful, but you need to know what the score means, and the reason that the DLQI and some other measures have been converted from being research only tools into being potentially a value in the clinic is that there are validated score meanings or score bands for the DLQI. So we know that if the DLQI score is greater than 10, this means that the patient's life currently is being very severely affected by their skin disease. And that's like an alarm bell going off: a DLQI greater than 10. You can hear those alarm bells ringing to get you to think about what else should we be doing for this patient. So it can be helpful in some clinical situations to have that reassurance that yeah, you really do understand this person's situation and in some depth.

Feldman: When it comes to the DLQI, I see it used in a lot of studies and I think its greatest strength is that has been used in a lot of studies. So I can compare different drugs on how much DLQI improvement there's been. I could look and see. Psoriasis is horrible, but his hidradenitis is even worse. Are there other things we can learn from the DLQI?

Finlay: We've had quite a lot of surprises from it in that there are people, such as the person I just first mentioned in the cardiology ward, whose DLQI score is remarkably low in an unpredictable way. Because we understand the meaning of scores, we've learned that some interventions, which apparently improve patient's clinical situation and also apparently improve to a certain extent their quality of life, actually don't. The level of improvement doesn't actually reach meaningful improvements. So the other aspect of measuring quality of life with a score is that not only do we have descriptive score bands but we can also look at the minimal clinically important difference (MCID), which in the DLQI is about 4 points on average. If your DLQI score just changes by 1 or 2 or 3, so what? It's a pretty rough and ready measure anyway. But if it changes by 4 points or more, that's an important change. There are a whole raft of ways in which the DLQI may give you information which you otherwise might have missed. For example — and I'm not suggesting that the DLQI should be used as a psychological screening tool, it really shouldn't be used for that purpose — if you've got somebody with a high DLQI score, it's a perfectly reasonable thing as a clinician to think: "Might there be some other psychological factors here at play that the patient needs further help with?"

Feldman: Especially if it's out of proportion to the amount of psoriasis that you see.

Finlay: Exactly. It might be a personality thing. The patient might be depressed. We all know how frequently depression in people with psoriasis is not recognized. It's a mistake I'm sure I've made many, many times over my clinical career.

Feldman: In psoriasis treatment, biologics have been revolutionary, and I've seen that they provide much greater DLQI improvements than topicals or even oral agents. I now see a push toward trying to get patients completely clear with these new drugs. And part of the evidence for doing so is that if you get people completely clear, they have statistically significantly lower DLQI scores than patients who only get to almost clear. What do you think about that?

Finlay: From a patient's perspective, you want the skin to be completely clear. If I had psoriasis, I would want to be completely clear but might tolerate some affected areas. From the patient's perspective, it seems logical. From a pharmaceutical company perspective, it also seems logical because by definition, taking that point of view is likely to result in more frequent prescription of various drugs. And as you've just said, there's the scientific evidence that it is appropriate to aim for complete clearance. The person to adjudicate on this is not really you, me, or the pharma companies; it is the patient, and I would suspect that from the patient's point of view, the less psoriasis you have, the better. It's a reasonable and appropriate approach from the pharmaceutical industry.

Feldman: And if that statistically significant difference in DLQI is less than 1 and the MCID is 4, what is that telling us?

Finlay: I'll have to rewind here on what I was saying about the MCID, because the MCID in itself is a very rough and ready concept which has been criticized on many fronts.

Feldman: The MCID being the minimal clinically important difference in the DLQI.

Finlay: Yes, the minimal clinically important difference. Almost certainly, the figure that represents the minimal clinically important difference is actually an elastic one. You need simple concepts to be able to work with them in the clinic, frankly, but probably down at the lower level of scores from 0 to 1, 2, 3, 4, 5, the MCID is probably much, much smaller. And up at the top end, the MCID is probably much greater. Four is a sort of average, if you like. But I agree with you, it becomes meaningless down at the 0 and 1 level.

Feldman: When I got into dermatology, I got focused on looking at lesions, making diagnoses. How did you get interested in patients' quality of life and how did it lead you to creating a measure to assess quality of life?

Finlay: When I was training, my boss was a person who was very influential in British dermatology — and internationally — in the late 20th century. Professor Ronnie Marks was obsessed with measurements. He was obsessed with measurement of the skin, directly of the skin. We spent all of our time as juniors helping in research, trying to measure the thickness of the skin, or the roughness of the skin, or ultrasound in skin. All of these measurement techniques have now become very widespread and much better validated. Anyway, I was influenced in that way. When I started on my own as a consultant to my first dermatologist job in Glasgow, it became pretty clear to me that, as these patients came through the door of my clinic, the real reason they were there was not because of the severity, if you like, of their skin from our dermatologist perspective, but the real reason they were there is because their lives were being messed up in some way by their skin disease. At about the same time, there was an editorial in the BMJ from a bunch of rheumatologists saying how measuring quality of life in rheumatology was rather important and perhaps other specialties ought to look at this. I read this and I thought, Yeah, let's look at it. So I went to Index Medicus, which in those days was not tapping into Google Scholar or PubMed. It was going to the library. These huge, great, heavy tomes. If you dropped one, you did a major injury to your foot. I looked up quality of life and dermatology and measurement methods for quality of life in dermatology. They didn't exist. There were none that were dermatology-specific. And I thought, let's try and make one.

We created the Psoriasis Disability Index and then the Acne Disability Index. And then I realized that with 2000 or more different skin diseases, it wasn't really an achievable object to come up with 2000 different questionnaires. Though, frankly looking around the literature now, it's getting that way. I thought we needed a single questionnaire which we could easily use in the clinic. So then, with Dr Gul Karim Khan, a PhD student of mine, we created the DLQI. The paper was rejected by the British Journal of Dermatology and probably for very good reasons. I don't think the draft we sent into them was particularly great, but I was so upset by it being rejected that after doing a bit more work on it, we sent it to Clinical and Experimental Dermatology, who kindly published it.

Feldman: You were the right person in the right place at the right time and you were so far ahead of the reviewers at the British Journal of Dermatology. They didn't understand and how could they? Nobody was paying attention to quality of life at the time.

Finlay: Yeah, that's right. Still, I quite often get articles rejected even these days and I always console myself with the idea that it must be an idea before it's time. That's how I look at it.

Feldman: One step closer to publication. Exactly. What is it about skin disease that really bothers people?

Finlay: You get a range of different answers from different people with skin disease. It's probably the impact on their close personal relationships. That's the biggest.

The impact on work, social events, and studying, doing normal things around the house, or going out shopping, all those things add up. But the number one thing is the impact on the close personal relationships.

It raises a criticism and a very important criticism of all measures such as the DLQI: The DLQI was entirely based on information from people with skin disease, but the questions are not specific to that individual person.

What you really want to know is what the issues are for that particular person, which is why your suggestion of using a simple question like, "How is your life being affected by the skin disease?" has huge strength. You find out from that particular individual what they're most concerned about.

Feldman: What do you think would be the best way to help general practitioners manage their patients with psoriasis?

Finlay: First of all, to take it seriously. This is probably being very unfair to many excellent general practitioners, but time and time again the story comes back that "My GP didn't really take it seriously and kept me going on all these topical creams and ointments, which didn't really work, and I eventually gave up," rather than the patient being referred on for more specialist advice. There's another aspect to it, and that is when topical therapies are prescribed, a mistake happens where insufficient quantities are prescribed. That's a practical issue.

Feldman: It's very easy for dermatologists to be discouraged by the care that primary care providers are giving because over and over again, we see where they didn't take it seriously, where they prescribed insufficient drug quantities, where the patient didn't get well. And it's very hard for us to recognize that every time the primary care doctor does give the right amount, does take it seriously, and the patient gets well, they don't send us those patients. And so, we never see all the successes that they're having.

Finlay: I was just about to say exactly the same. We have this massive selection bias in whom we see. And so, it's very easy to get the impression of, What the heck do these general practitioners think they're doing? All of the patients I see have had some problems with their general practitioner. But that's because the vast number of patients who are being treated successfully by the GPs don't cross your threshold.

Feldman: All right. What's one thing you want to pass along to our listeners before we wrap up?

Finlay: In your clinical practice, focus on what really matters to the individual patient sitting in front of you. And inform your clinical decisions with that additional information.

Feldman: Professor Finlay, you've left our audience with a great sense that when you're managing patients with psoriasis, you have to ask that particular patient how their life is affected by their skin disease in order to know how best to treat them. Thank you so much for that and for your time today.

Finlay: Thank you very much.

Resources

How is the severity of psoriatic arthritis and psoriasis usually assessed?

Dermatology Life Quality Index (DLQI)

Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use

Determining the Minimal Clinically Important Difference and Responsiveness of the Dermatology Life Quality Index (DLQI): Further Data

A Changed Life: The Life Experiences of Patients With Psoriasis Receiving Biological Treatment

Psoriasis Area Severity Index (PASI) and the Dermatology Life Quality Index (DLQI): The Correlation Between Disease Severity and Psychological Burden in Patients Treated With Biological Therapies

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