Detailing the Vitiligo Patient Journey Map

In recent years, management options as well as support groups for the atopic disease vitiligo have proved comprehensive and varied.

In an effort to engage with patients with vitiligo, as well as provide them with all the latest treatment options, investigators at the Vitiligo Research Foundation have been in the process of developing the Vitiligo Patient Journey Map.

In an interview with HCPLive, Yan Valle, CEO of the Vitiligo Research Foundation in New York, discussed the role of the interactive patient journey map in determining therapeutic options for patients affected by the skin disease, as well as coping strategies and avenues for accepting and embracing vitiligo.

Valle noted the recent influx of studies and general interest in the condition in recent years, a stark contrast to the limited data and discussions being held just a decade prior.

“There are nearly 50 companies to be exact (that) are working on different vitiligo treatments,” Valle said. “Some of them are just molecules, and some of them are drugs by Incyte or Pfizer.”

Initially, Valle and colleagues at the Vitiligo Research Foundation supported the vitiligo patient population with a surplus of educational materials such as vitiligo Q&A books, self-help materials, and scientific papers detailing new treatments.

However, they noticed a trend of patients with vitiligo seeking treatment options via online search methods such as Google, or through social media outlets.

While some patients were able to integrate themselves into vitiligo support groups through online communication, concerns were raised regarding patients receiving incomplete or incorrect data on available treatments.

To avoid misinformation, Valle and his team created the Vitiligo Patient Journey Map, an interactive map that incorporated a myriad of different patient experiences and perspectives, as well as several options for treatments and management.

“Our idea was to provide an overview to the patient's of the entire patient journey, and lay out all options available to them from our self-acceptance to proper treatment,” Valle said. “But, we wanted them to be sure that they (were getting) the correct diagnosis.”

The interactive map covers a wide range of treatment options, such as topical creams and ultraviolet therapy.

“For as long as patients want to learn more about (a) specific treatment we can zoom in to the granular level, and this (map) might be an encyclopedia or independent reference to all vitiligo treatments,” Valle said.

To hear more of this conversation, watch the video above. View a static version of the Vitiligo Patient Journey Map below.