Managing Vitiligo Patient Expectations

Seemal Desai, MD: Heather, patient education and counseling: I know you’re very passionate about really educating the patient. Tell me some of your pearls for educating about vitiligo repigmentation and the disease journey.

Heather Woolery-Lloyd, MD: We talked about this a little bit earlier and I tell them to expect those islands of re-pigmentation. Most of my patients are skin of color patients, so they definitely have these very prominent islands. I loved that you just mentioned that it might not look so great in the beginning, because it’s going from completely depigmented to speckled, and that becomes more obvious. We haven’t mentioned camouflage, but I do discuss camouflage with my patients. Men and women, but typically women, gravitate to that to cover up those changes as the skin is repigmenting. So, I set realistic expectations. Under promise, overdeliver. I can say with confidence that we can repigment your face. I really feel confident about that. I, again, talk about their expectations, and I do discuss camouflage because I do think that sometimes we forget that something very easy can give the patient a lot of confidence. In fact, they did a study that showed that camouflage makeup improved quality of life in vitiligo patients. While they’re getting better, they can use camouflage makeup.

Seemal Desai, MD: I love that. Nada, any pearls on making sure they stay on the treatment? That they’re motivated to stay compliant?

Nada Elbuluk, MD: One of my big things that we do at every session, and it can be very time-consuming, but we take photographs of every single area of vitiligo that they have. When they come in, I pull up those photographs, and we look at each body site in comparison to the photo. And that’s very motivating for individuals because…a lot of times they’ll come in and they’re like, “I don’t know if I’m better”—and you actually look at the photos. This just happened last week in my practice; we looked, and there are entire patches that have repigmented. But they see themselves every day, so it’s hard for them to notice how much change is happening. They’re just going through this treatment; it’s exhausting, and they’re not able to appreciate the change that’s happening over the course of months. So, I find photos to be very helpful in keeping patients motivated and adherent. Once they see the change, they’re like, “OK, this is working. This is worth the struggle I’ve been going through with remembering this every day.” So, I really like photographs and then repeating what everyone said, being their cheerleader, supporting them and knowing that this is a marathon and that burnout from therapy is a real thing too. This is a chronic disease, so we do have to really work with our patients. Sometimes they’re in a phase of life where they just can’t come in for phototherapy, or they work a job that is nights and aren’t able to do certain things during the day. So, you have to work with them and figure out a way to make it manageable because if the treatment is stressful, that increases the anxiety and depression that can come with the disease too. So, it’s really a balance.

Seemal Desai, MD: I’m so glad you mentioned that. We…as the doctor, have to be flexible with the patient. I had a patient just last week; he works for the UN [United Nations] as one of the lead humanitarian crisis experts. When the horrible earthquake happened in Turkey a few weeks ago, he had to go to Turkey, and he’s been in Turkey for a month and a half. Missed all his phototherapy. Now he comes back, and our light nurse is starting him back at the starting dose. So, he was frustrated. He’s like, “Why do I have to go through all this again?” So, we had to have a conversation. And when there’s the next world crisis that unfortunately may happen, he’ll probably have to go to that. We’re going to have to figure out a way that he’s still getting effective therapy, but we’re still managing it around that lifestyle. So yes, you’re right. I had to take a step back and say, “I have to think outside the box for you.” I’m glad you mentioned that.

Transcript edited for clarity