A total of 6 KOLs, 5 patient advocates, and 22 patients participated in this study. KOLs who participated specialized in Dermatology, Clinical Medical Genetics, or Dermatology and Immunology (Table 1). KOLs had a range of 15–27 years of experience treating patients with vitiligo. All 22 patients completed a qualitative interview. Patient ages ranged from 12 to 72 years, (with 1 adolescent participant [aged 12 years]). Patients were primarily female (63.6%) and non-Hispanic White (81.8%).

Table 1 KOL medical experienceConceptual Disease Model

Generally, both patient advocates and KOLs endorsed the model, which summarizes the most important signs and symptoms (i.e., depigmentation and loss of hair color) of NSV as well as the potential impact of these signs and symptoms on patients’ daily life (Fig. 1). Few modifications were suggested by each group.

Patient Advocates

Overall, patient advocates (n = 5) endorsed the conceptual disease model and agreed that depigmentation was the most common or primary symptom of vitiligo. While not every patient advocate experienced all symptoms in the model, all agreed that the list was appropriate and comprehensive for vitiligo.

Patient advocates had minor suggestions for revisions. One patient advocate suggested it may be helpful to reorder the list by most frequently reported symptoms (i.e., reordering loss of hair color and skin sensitivity to the sun such that skin sensitivity was the symptom directly below depigmentation). This advocate also considered adding depression to the list of symptoms but was satisfied that it was listed as a psychosocial impact. However, one other advocate questioned whether depression should be added to the list of symptoms, and not only be included as an impact.

Additionally, one patient advocate recommended an additional impact example of dietary changes under the daily activities impact. This individual described spending a lot of time on the internet researching how their vitiligo could be impacted by their diet and making subsequent changes to their diet as a result of those findings.

KOLs

All KOLs (n = 6) indicated that the conceptual disease model was comprehensive, and they provided only minor suggestions for revision. When considering the list of signs and symptoms, one KOL suggested reordering skin sensitivity to the sun so that it is the second symptom listed, because in their opinion, skin sensitivity is more common than loss of hair color. Another KOL suggested adding hearing loss which can occur more frequently in patients with vitiligo but is not commonly reported as one of the primary symptoms.

In terms of impacts, two KOLs (33%) noted that impacts on sleep are not often reported and may be more distal to vitiligo; however, the KOLs did not recommend removing this from the model.

One KOL also described that in rare situations they have heard of patients with vitiligo having suicidal ideation. It was recommended to add this to the psychosocial impact domain: “there were some very extreme rare cases, but I have come across them, is patients who even have suicidal ideation. Some have had vitiligo on their hands, and they wanted to cut their hands… some people can be quite badly affected, yeah.”

Disease Experience and Burden from the Patient PerspectiveBody Area Affected

Most patients experienced depigmentation on their arms, trunk, hands, and feet; 86% (n = 19) currently or previously had vitiligo on their face (Fig. 2). One patient experienced vitiligo spreading across multiple areas of the body, mentioning: “no, it went to different areas of my body, basically, almost all my body. Both of my hands were affected, my legs, parts of my face, my arms, my genital area, my torso, my feet, yeah, everything started getting white patches with time, and every time it was faster and faster.”

Fig. 2

Patient-reported body area affected by vitiligo (n = 22). aTrunk includes chest, stomach, back, and genitalia

Signs and Symptoms

There were few signs or symptoms described by patients other than depigmentation. The most frequently reported was increased sensitivity to the sun (n = 18, 82%) (Fig. 3). Patients described the need to keep their skin protected, especially the depigmented areas, because of how easily those areas of the body get sunburned. With one patient reporting: “A few minutes in the sun, and you’re burnt in those areas, and it’s super, super painful.” Another patient mentioned the impact of sensitivity to the sun on their activities, stating “any time I go to the pool or go to the beach or go for a walk, I have to be very careful to apply a lot of suntan lotion and be careful because I can get sunburned very, very easy. That’s probably the only physical symptom that come along with the condition of vitiligo.”

Fig. 3

Patient-reported nonpigmentation disease-related signs and symptoms (n = 22)

The next most frequently reported symptom was loss of hair color on the head, face, and body, and was noted by 73% (n = 16) of patients. One patient who experienced loss of hair color reported, “Of all the things I’d like to go away, I’d like my hair color to all be one color.”

Five patients (23%) reported itching, particularly in the depigmented areas, and two reported that their depigmented skin feels more sensitive overall compared to their pigmented skin. Dryness (n = 2, 9%) and rash (n = 1, 5%) were also reported.

Impacts of Vitiligo on Daily Life

To engage patients in thinking about how vitiligo impacts their daily life, interviewers asked about “good days” and “bad days.” The ability of patients to move through their day without attention to depigmentation would be considered a good day. As an example, one patient described a good day as the following: “a good vitiligo day would be a day in which I feel that I don’t care about people looking at me in that condition, and I would go out and do my things and interact with people with no issues, and I have had those days, and I have those days now.” In contrast, attention to depigmentation would be considered a bad day, with one patient mentioning, “when I was younger, a bad day would look like a bunch of people asking me like, ‘oh, what’s wrong with your skin,’ or just staring at me.”

Other examples of a “good day” included when vitiligo was not on the patients’ mind or if they felt confident in their appearance, while a bad day was described as a day when activities had to be managed around their vitiligo. Further, patients reported that new repigmentation would be considered as a good day, while noticing any new depigmentation or spread would be a bad day.

Beyond good or bad days, patients reported that vitiligo broadly impacts many facets of life, most commonly emotional well-being (n = 16, 82%; Fig. 4). Patients reported how vitiligo made them feel self-conscious, reporting, “very self-conscious and feeling like I can’t do the things that I want to do, or I avoid doing things because of my vitiligo.” Other patients expressed how vitiligo affected their emotions, saying, “it affected me severely in terms of my emotions and my thinking. I stopped interactions, social interactions with a lot of people, I didn’t want to be looked at, I didn’t want to look at myself on the mirror. I didn’t even want to go out, because of the sunburn, and because I didn’t want people to see me, children to look at me, people wondering what I was suffering from and stuff like that.” Another patient further commented, “yes, it makes me anxious on occasion. It’s made me anxious. That’s the same as worry. Depression? I don’t think… I think, sadness, maybe not depression.”

Fig. 4

Patient-reported impacts of vitiligo on daily life (n = 22)

Other areas impacted by vitiligo included leisure (n = 14, 64%), social (n = 11, 50%), work/school (n = 8, 36%), and sexual dysfunction (n = 7, 32%). Among patients reporting impacts on leisure, 10 patients (71%) expressed that the need to protect their skin from the sun impacts their ability to enjoy outdoor leisure activities. One patient reported, “I think the biggest impact for me actually is having to be careful with the sun. I am a very outdoorsy person, especially during the summer, I spend as much time outside as I can, and I’m a runner, so I run outside a lot, but as my patches have gotten more prominent as they’re on more visible parts of my body, I have to be more careful with sun exposure, so either I have to physically cover with more clothing, which is not always an option during the summer, or I have to wear lots and lots of sunscreen, which when you’re running is really hard because you sweat off the sunscreen, so it’s limiting my outside time in a way that is pretty upsetting.”

While two patients (9%) stated vitiligo does not impact them socially anymore, half of the patients (n = 11, 50%) said vitiligo does have social impacts. Regarding social impacts, four patients (18%) indicated self-isolation or simply keeping to themselves, four patients (18%) mentioned avoiding new experiences or being self-conscious around new people, and one patient said other people label her as abrasive.

Additionally, seven patients (32%) shared the impact that vitiligo had on their schooling or work. For schooling, patient experiences included not taking swim class and being bullied during school because of their vitiligo. The impacts that vitiligo had on work ranged from having colleagues or others at work see vitiligo depigmentation but not asking the patient about their condition, the patient avoiding colleagues, to coworkers making hurtful comments about their vitiligo. Two patients reported major economic impacts due to vitiligo with one patient reporting, “I retired a year and a half ago, and I’ll be honest with you, vitiligo was part of the decision, because we were doing a lot of Zoom calls, and I was like putting the makeup on, and there’s something about these cameras on these phones and iPads and little technology that really, like, even if I put makeup on, you can still see through it.… I could have worked a couple of extra years and made a ton more money, but I was like, no. I just, so, it wasn’t, believe me, it wasn’t a major part of the decision, but it was a part of the decision.” The second patient stated, “Well, yeah, like right now, I don’t have a job per se. I used to have—not an official job, how would I call that—a formal, let’s call it formal job for many years, and after the last company I worked for, I had to work from home, and then that company closed its door back in 2017, I think it was, and I decided not to go out and look for a job just because I didn’t want to go out and do interviews and things like that. I wasn’t feeling comfortable back then. Then I just started doing my own thing, my own businesses, and doing my own things to get income, and that’s how my day-to-day changed. I don’t get up and go and do work anymore. I just stay home and do my own things.”

Seven patients (32%) confirmed vitiligo also has an impact on their intimate relationships. Patients, even in relationships/marriages, shared their concern over depigmentation in their genital area.

Vitiligo Characteristics (i.e., Location, Severity, and Size) Impacting Daily Life: Identification of Most Important Concepts to Patients

When asked about the most important concept related to how bothersome vitiligo is (e.g., number of vitiligo areas, severity, size, or location of depigmentation), 12 patients (55%) responded with most reporting that mainly the location of depigmentation was the most bothersome aspect (n = 7, 32% location only; n = 2, 9% location and size). Two patients (9%) stated that the size of the depigmented area was most important. One patient stated they were not impacted by these concepts of vitiligo. Regarding impacts on daily life specifically, half of the patients (n = 11, 50%) commented about the location of depigmentation playing a role in the impact that vitiligo has on their lives. The main issue for patients regarding the location is the attention others give to the affected areas, e.g., if the areas can be easily covered with clothing, the issue is easier to manage. Because the face, hands, and some other areas are unable to be covered, patients reported worse impacts, e.g., one patient reported, “it definitely matters. Areas that, like my hands and even most of my face that are, so, the areas that I feel somehow are more visible, although, I guess, all, I mean, to some degree, in different situations, all of them are going to be visible, but like my face, particularly, was a very bothersome one, and then the hands one was bothersome, because it just felt like I couldn’t hide it anymore under clothing.”

Nine patients (41%) gave insight into the size and severity of the affected areas and noted that the larger or more severe the area of depigmentation, the more “noticeable” the vitiligo. One patient felt that both size and severity were impactful, “I think the size of the area affected matters more to me.… Because it’s more visually noticeable. In spots where you only have a few little spots and they’re kind of mixed in, you don’t see them as much as a large white patch, like what I have on my legs. Like you can’t not see a large white patch of skin, whereas the smaller parts, or the areas where I have smaller bits of it, you don’t notice it as much.”

Additionally, five patients (23%) shared that the number of depigmented areas had an impact on the way vitiligo impacts life. One patient spoke to the number of areas of the body (e.g., whole body), “like I said, it just spread to my whole body, and it just looks different.”

Meaningful Change Perceptions: Defining Treatment Success from the Patient Perspective

All 22 patients responded that they would need to experience repigmentation to consider treatment to be a success. Two patients (9%) indicated that it would be more important to stop the spread of depigmentation: “anything that could a) reduce the spread of vitiligo, but b) also something that would repigment the skin. I think slowing the spread would be incredibly helpful, not only for me, but for a lot of people, but repigmenting would also be a very nice benefit to a treatment.” This patient further reported that they think slowing the spread would be most important relative to repigmentation: “which one of the two is more important? I think slowing the spread. Treatments that I know of that will like permanently stop the growth, but that would be, you know, beyond belief, fantastic, if there was.” While three other patients (14%) indicated that in addition to repigmentation, they would want a reduction in the spread of their vitiligo to consider a treatment successful.

Patients were further asked to describe the amount of repigmentation that would represent a meaningful improvement (Fig. 5). Among 18 patients who provided clear thresholds, the most commonly reported amount of repigmentation that would constitute a meaningful improvement was 20–25% (n = 7, 39%), followed by 75–90% (n = 5, 28%), and 40–50% (n = 4, 22%). Most patients reported that the most important body areas for repigmentation would be the face (n = 14, 64%) and hands (n = 12, 55%) (Fig. 6).

Fig. 5

Patient-reported meaningful improvement threshold in repigmentation (n = 18)

Fig. 6

Patient-reported body areas deemed most important for repigmentation (n = 22). aTrunk includes chest, stomach, back, and genitalia