Drs Woolery-Lloyd, King and Pandya share how vitiligo affects patients’ quality of life.
Brett King, MD: Heather, let’s hear from you on the burden of vitiligo and its impact on quality of life. We’ve heard a lot about who has it, what it is, and disease activity, but tell us about the burden of vitiligo on patients and their families.
Heather Woolery-Lloyd, MD: In my practice, vitiligo has a tremendous impact on quality of life. First, I practice in Miami, where everybody’s skin is exposed. Patients who have vitiligo feel very self-conscious, so they may wear long-sleeve shirts in the middle of summer or long pants because they don’t want people to see the vitiligo on their extremities. From personal experience, I see a tremendous impact on quality of life, but multiple studies have shown that vitiligo has a tremendous impact on quality of life. In 1 study, over 90% of subjects it had a significant impact on quality of life. The vitiligo causes impact. It’s something I discuss with patients. I spend a lot of time talking about reassuring them because a lot of times patients will say, “I know it’s just my skin, so I shouldn’t be so upset about this.” I reassure them that it’s OK to be upset. I validate those feelings so that they don’t feel embarrassed. They’re concerned about their vitiligo because it’s “just a skin disorder.” I spend a lot of time validating patients’ feelings, addressing quality-of-life issues, and reassuring them that those feelings are normal and expected and OK.
Brett King, MD, PhD: I’m curious: if a patient is sitting in front of you and says, “I have these white spots now. What can I do?” Do you dig deep? Do you say to the patient who hasn’t brought up to you that they’re sad or bothered or that somebody said something to them about it? Do you go far enough to say how is this affecting you?
Heather Woolery-Lloyd, MD: In my practice, people are very forthcoming. That’s almost the first thing that comes out of someone’s mouth when it comes to their vitiligo diagnosis and how it’s affecting them. I don’t find that my patients are hesitant to talk about it. These visits often have a lot of tears. I want to emphasize to them that it’s OK. I never elicit it. I see a lot of women who feel very comfortable telling me how this affects them, how this affects their ability to date or changes everything they wear. They might have an important event coming up, and they’re going to be wearing a dress and more of their skin will be exposed.
My patients tend to volunteer this information, but regardless of whether the patient mentions it, I say, “I understand how this affects you. I know this tremendously impacts your quality of life.” I give them reassurance. If they don’t volunteer it, I volunteer that information, so they know that they’re not alone and that it’s normal and OK to have resentful feelings about getting vitiligo, which is what a lot of patients feel. “Why did I get vitiligo? What could I have done to prevent this?” I do a lot of lifestyle discussions in my office. People ask, “Is there anything I can do, or take, or eat?” Although some data suggest that antioxidants may be helpful—and I do recommend an antioxidant-rich diet—when patients have vitiligo, our best therapies are pharmaceutical.
Brett King, MD, PhD: Too often on an appeal for treatment, I’ll get a letter back from an insurance company that says vitiligo is a cosmetic disorder, but it’s just not true. The burden, the effect on patients and the people around them, is huge. We need to acknowledge it. As you said you do, we must give patients the OK to cry, to be angry, to be resentful that they have it. That’s part of the process.
Amit Pandya, MD: Can I make a comment on that?
Brett King, MD, PhD: Please.
Amit Pandya, MD: In my practice, like Heather’s, many patients are forthcoming with how much it affects their quality of life. But I see a lot of different ethnicities and races and people from all over the world, including people who come from conservative cultures in which emotions are not so forthcoming. When we talk about treatment, I say, “We can do treatment that’s going to take a lot of hassle and a lot of trips. It’s going to take a lot of work. Or we can do something milder that may not work as well. How much does this bother you?” Sometimes those people who aren’t so forthcoming, they’ll say, “It does bother me.” I say, “Tell me how much. Do you think about this every day?” Yes. “Do you think about this 50% of the time when you’re supposed to be concentrating on something else?” Yes. That’s the way I probe individuals who aren’t so forthcoming.
The data are very interesting. If you look at the DLQI, the Dermatology Life Quality Index, it doesn’t necessarily correspond to skin color. It’s very interesting. It corresponds more with culture. There are some cultures in which people are embraced. They’re quite open with their lives, and they have a community that supports them. Even if they have dark skinned, their DLQIs are not that high. But in some areas of the world, especially the Middle East and India, even if you’re light-skinned, the numbers are super high. It has to do with the way that culture identifies a person with vitiligo, puts labels on that person, and treats that person in marriage, in terms of seeking jobs. That makes a difference. We also have to look at the culture and where the patients are from.
Brett King, MD, PhD: I agree. This aspect of the disease and the encounter between the doctor and the patient is important. Coming back to you, Heather, I have another question, and this relates to earlier comments by Amit and David Rosmarin relating to how you can have very little body surface area involvement, but if it’s on your face or your hands, it’s huge. What about the impact of location on quality of life—face, hands, genital involvement? How should we be thinking about even small lesions on these important areas and their effect on patients?
Heather Woolery-Lloyd, MD: For my patients who have facial involvement, even if it’s a tiny area around the eyelid or the lips, it’s something that bothers them. In some ways, the patients are right, we look at people’s faces when we’re speaking. One thing I feel great about is that we have great treatments for repigmenting the face. Where I live, where we have a very high UV [ultraviolet] index. It’s very sunny, so there’s a lot of stimulation from sunlight or UV radiation. That’s the great news. I reassure patients about their face because I tend to get great success on the face. The hands, as we know, are another area that people feel very embarrassed about. We don’t have great results there. It’s a lot of hand holding and doing the best we can, but I can’t guarantee the type of results that I can on the face when I’m treating vitiligo. The good news is that, although facial vitiligo has a tremendous impact on quality of life for some patients, in some ways this is the easiest vitiligo to treat. The bad news is that hands and genitals can be more challenging and have a huge impact on quality of life.
Brett King, MD, PhD: Agreed. Wrapping up this section, we learned about vitiligo and its prevalence. It’s an autoimmune disorder that affects about 1% of the population. People of all races, all sexes are affected. We learned about segmental vitiligo, nonsegmental vitiligo, and mixed vitiligo, and how these present. We learned about signs of active disease and the burden of vitiligo on patients. That will wrap up this section and take us into segment 2.
Amit Pandya, MD: Brett, this may be just an incidental thing, but I want to throw this in there because it may be important to primary care physicians too. We did a study with the SF-36 [36-Item Short Form Healthy Survey], which is a general health-related quality-of-life measure. We found that with patients with vitiligo, the mental effect on health-related quality of life is equal to that with congestive heart failure and asthma and more than hypertension and psoriasis. The only thing that was worse was depression. Vitiligo has an effect on quality of life similar to a lot of diseases that are outside dermatology. In terms of the location, we did a study in which we looked at location and compared that with VitiQoL, the Vitiligo Quality of Life Index. The face was No. 1 and hands was No. 2. There are cultures in which the body is covered so much except for the hands and a little of the face. If those patients have vitiligo on their body, many of them never get treated. But if it’s on the face or the hands, some of them want to go as far as depigmenting those areas. That’s the only area that society sees, so the location is super important.
Brett King, MD, PhD: Thank you for those comments. It’s critically important to not underestimate the effect of this disease on patients. It’s easy to say, “You have only 5 spots,” or “You have only 8 spots.” But as we’ve heard multiple times, if those spots are on your face, hands, or genitals, it’s profoundly important—probably no matter who you are. Amit, as you pointed out, culturally—not to be overly dramatic—it truly can change the course of your life to have vitiligo in the way that society regards you. We can’t be dismissive of the disease.
Amit Pandya, MD:They say, “I can’t go to the grocery store. Everyone at the checkout stand is staring at me. When I hand my money to the cashier, she says, ‘Put the money on the counter’ because she doesn’t want to accidentally touch my hand. She thinks I have a contagious disease. This affects me greatly.” It’s devastating because people are always watching. Kids will pull on their mother’s clothes and say, "What’s that?” This is a daily experience for these individuals who suffer with vitiligo.
Transcript Edited for Clarity