Vitiligo’s effects on clinical burden and patient quality of life are addressed by Brett King, MD, PhD, and David Rosmarin, MD.
Jeffrey D. Dunn, PharmD, MBA: Dr King, what are the clinical consequences of vitiligo? Secondly, can you explain the effects on the patients’ quality of life? The reason I’m separating those in this question is because from a payer perspective, we tend to focus on things like direct causes and direct expenses. We struggle to value or understand what quality of life and patient-reported outcomes mean in our world. Can you explain the clinical burden of the disease state and how it impacts the patient?
Brett King, MD, PhD: Yes. In terms of knowing whether patients with vitiligo suffer untoward health consequences, such as being predisposed to cardiovascular disease or other internal organ disease, there are emerging data of systemic inflammation in vitiligo, but it’s uncertain. Our data aren’t nearly as advanced as they are in psoriasis. There are some emerging data.
When we think about the effect of vitiligo on people, what’s clear is quality of life and, in a sense, the life trajectory of patients with this disease. I want to step out of the medical role for a second and have everybody listening to this imagine having white spots all over your face, or surrounding your eyes, or all over your arms and hands. This is a simple exercise. I don’t mean to be snarky here. Anybody who’s human is going to understand that a day in the life of that person is very challenging. You’re going to make life decisions based on that because people think something is wrong with you. They don’t want to touch you if you’re a cashier. “Why don’t you put the cash down on the counter and I’ll grab it. I don’t know what you have. Something is wrong with your hands. Something is wrong with your face.” This is where it’s clear.
To put the medical hat back on, we have lots of data to show this. There are lots of data to show work productivity, life decisions, and quality of life with numerous instruments. But as you point out, that may or may not carry a lot of weight. But until we get to a place where we can better detail these things, it should be abundantly clear to everybody that a day in the life of one of these people is going to be challenging, and that it negatively impacts life. Dave, you and I see a lot of these patients. Do you have a different take? Did I overstate what I said? What do you think?
David Rosmarin, MD: I completely agree with the view that Dr King articulated so well, that there’s an impact on patients’ quality of life. I want to emphasize that it can be somewhat variable, and there are a lot of things that contribute to that variability. Some patients can adapt to their vitiligo differently than others. For people in some cultures, particularly in Southeast Asia, it has a significant impact on their quality of life. For others who may be fair-skinned with less noticeable vitiligo or are older, it doesn’t have quite the same impact. But it affects relationships and people’s ability to go out, and is certainly associated with different aspects of mental health. We consider this to be a medical disease. Dr King put that in a good view by having each of us put ourselves in the shoes of patients who have vitiligo to help us better understand what they experience.
Jeffrey D. Dunn, PharmD, MBA: That’s probably a good approach in most cases. That’s great context. I’ll go out on a bit of a limb and say that hopefully one of the good things that came out of the COVID-19 pandemic is that we have a slightly different appreciation of things like quality of life and mental health and how it impacts people. We mentioned the huge impact on a patient’s quality of life. How do you work through that from a physician perspective? What tools do you use? What measurements do you use when you’re treating patients with vitiligo? Dr Rosmarin, if you wouldn’t mind starting with that question.
David Rosmarin, MD: We don’t have tools that we use in clinical practice for assessing quality of life. There are some research tools that are used for trials, but nothing that’s used in clinical practice. As a clinician who sees somebody who has vitiligo, I may ask them how it’s affecting their quality of life and have some qualitative stories. I try to see if patients feel like they aren’t going out as often, are changing their clothing, or feel as if they’re stared at. I’m trying to see how it’s affecting them. But there are no standardized tools or assessments that we use in clinical practice.
In terms of the assessment tools that we use in clinical trials, we wish we had more or better tools to use. Vitiligo doesn’t cause physical symptoms, so measures like the DLQI [Dermatology Life Quality Index] don’t exactly fit. Some patients with vitiligo can be itchy, but usually it’s asymptomatic. We usually don’t associate it with pain. It’s the burden on mental health that we’re particularly concerned about. There are some vitiligo-specific tools, such as the VitiQoL [vitiligo-specific quality-of-life instrument]. But even though that’s been validated, we don’t have studies that show that there are interventions that can make a difference in VitiQoL.
Jeffrey D. Dunn, PharmD, MBA: It probably isn’t dissimilar from a lot of disease states, even psoriasis or rheumatoid arthritis, where we have ACR [American College of Rheumatology] scores and PASI [Psoriasis Area and Severity Index] scores and other things. The tools used in clinical trials are often very different from what we do in practice, which makes it a bit of a challenge.
Transcript edited for clarity.