Reframing Expectations Around Treatment Efficacy in Vitiligo

Announcer:
You’re listening to DermConsult on ReachMD, and this episode is sponsored by Incyte. Here’s your host, Dr. Charles Turck.

Dr. Turck:
Welcome to DermConsult on ReachMD. I’m Dr. Charles Turck and joining me to discuss the importance of reframing patients’ expectations around treatment efficacy in vitiligo care is Dr. John Harris. He’s a Professor and Chair of the Department of Dermatology at the UMass Chan Medical School, and he’s also the Founding Director of the Vitiligo Clinic and Research Center there. Dr. Harris, thanks for being here today.

Dr. Harris:
Thanks for having me.

Dr. Turck:
So let’s just dive right in, Dr. Harris. From your experience, what are some of the most common misconceptions patients with vitiligo have about the time it takes for treatment to take effect?

Dr. Harris:
Yeah, there are a lot of misconceptions. As I talk to patients, I try to set those expectations about what they can expect to see over the next few months, weeks, and days. And it’s difficult because there are other skin diseases that respond very quickly, like eczema, or atopic dermatitis, and psoriasis. When you start treatments for those diseases, within a few days or weeks, those can be completely clear. And so I think that sets a difficult bar for those who are treating vitiligo, both for patients when they hear others are responding that quickly with other things, and dermatologists who are treating those patients and maybe not as familiar treating vitiligo. But vitiligo takes a long time to get better. We speak in terms of months. Certainly not days, and not even weeks. I generally tell patients that they should expect to see some improvement within two or three months. And for clinical trials and things, we talk about six months as a primary outcome date. We need to treat for about six months to see a statistically significant improvement in vitiligo and two or three months to start seeing improvement.

Dr. Turck:
When a delayed treatment response does occur, how does that impact our patients?

Dr. Harris:
Well, it’s really frustrating for them, I think. For patients who are taking new medicines for vitiligo, the fact that it takes so long is a really difficult thing. They also give up early and therefore think that treatments don’t work for them. There are parts of the body that don’t respond to treatment typically, and so depending on where they’re treating, that can be confusing, and so I think that it’s going to be very important for the conversations with our patients to keep them going, to get them excited about the treatment and about what areas are likely to improve to set their expectations appropriately so that they continue using the medicine because I think that’s critical to know if it’s going to work. For them, they need to commit to a long-term treatment.

Dr. Turck:
Now if we switch gears for just a moment and look at this from the clinical perspective, would you share some factors that might affect a patient’s response to treatment?

Dr. Harris:
Yeah, one of the most important factors to consider in the ability of a patient to respond to treatment is the location of the vitiligo. So vitiligo can affect any part of the body. It likes to target the face and the hands, which is distressing for patients because those are so visible. But it can appear anywhere: the genitals, the trunk, the arms, the legs, the back. So really, it can affect anywhere. But that really has implications for the response to treatment. And so what I tell people is any part of the body with hair follicles or hair growing within the areas where the vitiligo is responds well to treatment. And the denser the hair follicles, the faster and more complete the response. Areas of the body with no hair growing generally don’t respond very well to treatment, if at all.

Vitiligo responses typically are perifollicular, so we talk about perifollicular repigmentation. And when we see early responses, you look at the white spot of vitiligo, and you can see little brown dots within it. And each brown dot is around a hair follicle because that’s where the melanocyte stem cells live. And so when we treat, we get rid of the autoimmunity and allow the skin to repigment; that’s where the most robust repigmentation comes from. And so areas with hair follicles, of course, do much better than areas that don’t. There are other forms of repigmentation, primarily marginal repigmentation, where the pigment comes from the edge of the lesion. But that’s a very slow and limited repigmentation, maybe one- or two-millimeters total. And so areas that are of glabrous skin with no hair growth like the hands, the feet, certainly the fingertips, the knuckles, some bony prominences, and the genitals really don’t respond. That’s the bad news because hands and feet are very visible and patients want that. The good news is that the face responds very well. The face has the highest density of hair follicles on the body. So those areas respond very well and very quickly, and you can get complete repigmentation of the face within about six months, which is what we’ve seen with the older therapies and certainly the newer therapies that are coming out.

Dr. Turck:
For those just tuning in, you’re listening to DermConsult on ReachMD. I’m Dr. Charles Turck, and I’m speaking with Dr. John Harris about how delays in treatment response can impact patients with vitiligo.

So, Dr. Harris, given everything we’ve discussed, how can we help our patients reframe their expectations about the time that’s needed for treatment to be successful?

Dr. Harris:
Any conversation about treatment with a patient should include proper expectations about what the treatments can and will do, including the timeframe of that response. And so this can take some time. I think patients kind of say, well, “How long am I going to take this, and when do I stop using it?” And generally, I’ll say, “Well, you’ll stop using the medicine when you’re happy with the response and when you’re satisfied.” And I tell them, you know, in the face, that could be six months. On the body, that could be a year. On areas where there’s no hair growth, it can be, you know, never. Really kind of getting them to understand what to expect is really important. And sometimes that’s discouraging for patients. Sometimes patients come in with vitiligo only on the hands, and they say, “Wow, with all these new treatments and the excitement around vitiligo, you still can’t help me.” We try to do that so that patients know what to invest in ahead of time because sometimes patients come in and say, “You know, I don’t mind vitiligo on my hands. I just want to keep it off the face.” And so creating the treatment regimen to do that can be really important. And understanding that patients have different needs and different desires and trying to get at what those are is really important. “What are you looking for from the treatment for vitiligo, and what areas do you want to see better?” Sometimes they come in and they only care about their hands, and there’s not a whole lot that we can do for them, and that can be really difficult. When I say hands, the dorsal hands have some hair growth – depends on the patient – those can respond. Fingertips almost never respond and understanding that is really important.

But encourage them also that these treatments do work. We’ve been treating vitiligo for millennia, actually. 3,400 years ago in India, there were ancient writings that talked about vitiligo and how to treat it including sunlight and some other treatments, so treatments do work. I think that that’s an important message to set for patients, that these will work if you’re patient and consistent. And then partnering with them and teaming with them to design a treatment regimen that works for them and gets them the outcome that they’re looking for with the appropriate expectations is critical.

Dr. Turck:
And once we’ve better managed their expectations, what signs should we tell our patients to look for that might indicate a treatment response?

Dr. Harris:
Yeah, that’s the exciting piece, I think. Within two or three months, they should be starting to see little brown dots around the hair follicles within their lesions. That’s the earliest type of response. And so that’s perifollicular repigmentation that we talked about, and sometimes there can be hundreds or thousands of those little dots, depending on the area and how large the lesion is. In my experience, once patients see that, they’re hooked because they can see visible evidence with their own eyes that the treatment’s working. Then those little brown dots continue to grow, and they then kind of fuse with each other, and eventually can erase the entire lesion depending on what we talked about before: the location and the amount of hair. And so getting patients to use the treatments long enough to start to see that is really important.

Dr. Turck:
Before we close, Dr. Harris, do you have any final thoughts you’d like to leave with our listeners today?

Dr. Harris:
Yeah, this is an exciting time for vitiligo. I would say for patients with vitiligo, there’s been no time like the present for options for them. And these options are really effective, and this has been shown now with phototherapy that we’ve been using for millennia and certainly within the past few decades with UVB phototherapy; the older topicals that we’ve been using also are effective. But now, we have clinical trials and new treatments that are coming and a new FDA-approved therapy, so this is just the beginning. This is the tip of the iceberg of new treatments and options for patients. I would say over the next 10 to 20 years, things are going to accelerate pretty rapidly with the clinical trials and the outcomes that we’re seeing. New treatments like JAK inhibitors, newer treatments that expand even beyond those to biologics and other targeted therapies can be really exciting for patients. And not just the patients, but the doctors who treat them.

Dr. Turck:
Well as those final thoughts bring us to the end of today’s program, I want to thank my guest, Dr. John Harris, for joining me to share his insights on how we can reframe our patients’ expectations around vitiligo treatment efficacy. Dr. Harris, it was great having you on the program.

Dr. Harris:
Great to be here. Always happy to talk about vitiligo.

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This episode of DermConsult was sponsored by Incyte. To access this and other episodes in this series, visit ReachMD.com/Derm Consult, where you can Be Part of the Knowledge. Thanks for listening!