Vitiligo Burden Is Variable but Can Be High, Dr David Rosmarin Explains

Although there aren’t usually physical symptoms with vitiligo, patients are often impacted mentally, explained David Rosmarin, MD, vice chair, education and research at Tufts Medical Center.

Vitiligo is a condition that causes the skin to lose its pigmentation and can result is discolored patches on parts of the body. The burden of vitiligo is variable but can be quite high, and patients may spend a lot of time on cosmetic products, he said.

In part 1 of the interview, Rosmarin discusses the incidence and prevalence of vitiligo, patient characteristics, comorbidities, and the impact on a patient’s quality of life.

Stay tuned for part 2, in which he highlights the economic burden of vitiligo and insurance coverage of treatments.

The American Journal of Managed Care® (AJMC®): What is the incidence and prevalence of vitiligo in the United States and how has the prevalence trended over time?

Rosmarin: We don't know exactly how many people have vitiligo in the United States or worldwide. It's estimated that between 0.5% to 2% of the world population will have vitiligo. It affects all races, ethnicities, and genders. There was a recent study that surveyed people from all different countries around the world to try to get a better handle on what is the true incidence of vitiligo in the population, and it's somewhere still within that range of 0.5 to 2%. We think in the United States, it may be closest to around 1.4% from that survey.

AJMC®: What are the typical patient characteristics of someone with vitiligo, and what are causes that we know of vitiligo?

Rosmarin: There are 2 main types of vitiligo. When we say vitiligo, we typically mean the non-segmental form, which is usually symmetric and affects any area of the body, but very commonly the hands, the face—particularly around the mouth and eyes—armpits, and genital regions, as well. The other type is segmental vitiligo, which really just affects a localized area. Most commonly the face, second most commonly the trunk. More typically that happens in the pediatric population where patients rapidly progress over several months to up to maybe 2 years, and it's more associated also with white hairs in those localized areas. It's a little bit harder to treat, but once the patients fully progress, they tend not to have further spreading of their vitiligo for that segmental form.

For non-segmental vitiligo, again, it's often symmetric. It can occur any time in life. It can be progressive or stable. It certainly affects all ages, genders, and races. The most common comorbidity is thyroid disease, particularly autoimmune thyroid disease, and up to 25% of patients may have that. Other autoimmune conditions can also be concomitant with vitiligo but are much less common, such as pernicious anemia, Addison disease, or type 1 diabetes.

AJMC®: Could you please discuss the clinical burden associated with vitiligo and its effects on patient's quality of life?

Rosmarin: Vitiligo can have a varying effect on patients. Some patients may come into the clinic, and they just want to know, what's happening to them, and they may not be so bothered by it, and they just want to be accepted for who they are. That tends to be a minority of patients, but for those, we should all be accepting and give them the support that they need. For others though, they may have different goals. One being stopping the rapid depigmentation that's taking place. Another may be re-pigmenting the patient, and then finally, once a patient is re-pigmented, making sure we maintain that pigment.

For many though, it can really be devastating to their quality of life. Even though there usually aren't physical symptoms, it can certainly have impact mentally. Patients feel as if they are bullied, they're being stared at. They may go to the grocery store and the person at the register says, put the money down because they don't want to touch them for fear of getting disease, fear that they're contagious, which they're not. Patients may change their hairstyles or clothing to try to cover up and hide their vitiligo. There can be a burden of disease in terms of use of cosmetic products that can take time, and treatment, particularly with phototherapy, can be very burdensome for patients, and they don't have easy access that can take a lot of time out of their schedule to go for those sessions.

The burden for patients with vitiligo can be quite high, but it's also variable. When we look at willingness-to-pay studies, we know that patients are willing to pay quite a bit of money out of pocket, oftentimes, if they were able to effectively treat their vitiligo because it really affects them.

AJMC®: What quality of life measures are used for vitiligo and how might these tools be valuable to payers to improve care?

Rosmarin: Unfortunately, it's really challenging to use the quality-of-life measures that we have already for other inflammatory diseases like psoriasis or atopic dermatitis and apply them to vitiligo, because they're very different diseases. Psoriasis and atopic dermatitis have much more physical symptoms than vitiligo does, where it's more of an emotional impact. Using measures like the Dermatology Life Quality Index do not work well for patients with vitiligo, and it's very challenging to develop tools that currently don't well assess the burden of disease for our patients.

One measure, which I think works well is the Vitiligo Noticeability Scale, which is a patient-reported outcome, and patients rate a 0 or 1 if they have the vitiligo no longer noticeable or a lot less noticeable. I think that is an impactful measure for patients to see how well a treatment works for them.