Of 284,111 participants invited to the survey in EU5 countries, 68,840 clicked on the link, and 1554 reported a vitiligo diagnosis that directed them to the complete survey. Of these, a total of 1289 (82.9%) patients completed the survey, and 1151/1289 (89.3%) patients were included in the analysis [France, n = 250 (21.7%); Germany, n = 250 (21.7%); Italy, n = 200 (17.4%); Spain, n = 200 (17.4%); UK, n = 251 (21.8%)]. The median (range) age of the 1151 EU5 patients was 38 (18–93) years, and 659 (57.3%) patients were men (Table 1).

Although the majority of patients in EU5 countries [745/1151 (64.7%; 95% CI 61.9, 67.5)] had Fitzpatrick skin types I–III, the highest percentage of patients with Fitzpatrick skin types IV–VI (i.e., darker skin types) was reported in France [123/250 (49.2%; 95% CI 42.8, 55.6); P < 0.05 vs all], Germany [92/250 (36.8%; 95% CI 30.8, 43.1); P < 0.05 vs Spain], and the UK [83/251 (33.1%; 27.3, 39.3)]. A total of 517/1151 (44.9%; 95% CI 42.0, 47.8) patients had > 5% affected BSA per the SA-VES, with significantly higher rates in Germany [141/250 (56.4%; 95% CI 50.0, 62.6); P < 0.05 vs UK, Italy, and Spain], France [134/250 (53.6%; 95% CI 47.2, 59.9); P < 0.05 vs Italy and Spain], and the UK [119/251 (47.4%; 95% CI 41.1, 53.8); P < 0.05 vs Italy and Spain] versus Italy [62/200 (31.0%; 95% CI 24.7, 37.9)] and Spain [61/200 (30.5%; 95% CI 24.2, 37.4)]. Additionally, patients in Germany and France also had the highest rates of facial vitiligo involvement [181/250 (72.4%; 95% CI 66.4, 77.8) and 173/250 (69.2%; 95% CI 63.1, 74.9), respectively; P < 0.05 vs the UK, Spain, and Italy; Table 1].

Mean (SD) time between patients first noticing lesions and achieving a formal diagnosis was 1.5 (4.0) years; 516/1151 (44.8%) reported previous misdiagnosis. Most patients reported slow progression [443/1151 (38.5%)] or initial rapid progression [362/1151 (31.5%)] of vitiligo, whereas only 122/1151 (10.6%) patients reported no progression since the first appearance of lesions. Patients from Germany were significantly (P < 0.05) younger at the time of first noticing lesions [mean (SD), 24.0 (11.7) years] than those from the UK [30.8 (15.3) years], Spain [29.0 (12.8) years], Italy [28.6 (13.9) years], and France [26.6 (14.0) years]. A family history of vitiligo was noted by approximately half of patients [579/1151 (50.3%; 95% CI 47.4, 53.2)], with highest rates in France [166/250 (66.4%; 95% CI 60.2, 72.2)] and Germany [147/250 (58.8%; 95% CI 52.4, 65.0); Table 1]. Nearly two-thirds [749/1151 (65.1%; 95% CI 62.2, 67.8)] of patients noted experiencing flares during periods of stress, and 708/1151 (61.5%; 95% CI 58.6, 64.3) noticed itching before or during flares; rates in Germany [196/250 (78.4%; 95% CI 72.8, 83.3) and 197/250 (78.8%; 95% CI 73.2, 83.7), respectively] were significantly (P < 0.01 and P < 0.0001) higher than in other EU5 countries (Fig. 1).

EU5 patient experiences of (a) vitiligo flares during periods of stress and (b) itching before or during vitiligo flares. aP < 0.001 vs Germany. bP < 0.01 vs Italy; P < 0.0001 vs Spain and the UK. cP < 0.05 vs Spain. dP < 0.001 vs Italy; P < 0.0001 vs Germany. eP < 0.0001 vs Italy, Spain, and the UK. fP < 0.01 vs Spain; P < 0.001 vs the UK

Few patients [98/1151 (8.5%)] were treatment-naive; 12.1% (139/1151) had used one treatment and 79.4% (914/1151) had used > 1 treatment [2–5 treatments, 519/1151 (45.1%); 6–10 treatments, 269/1151 (23.4%); ≥ 11 treatments, 126/1151 (10.9%); Table 1]. Overall, patients had used a mean of 5.0 (95% CI 4.8, 5.3) treatments to manage their vitiligo. A significantly (P < 0.0001) greater number of treatments were used by patients from Germany [mean, 6.5 (95% CI 5.8, 7.2)] versus other EU5 countries. More patients in Germany had also reported participation in clinical or experimental trials of medical vitiligo treatment [98/250 (39.2%; 95% CI 33.1, 45.6); P < 0.05] versus other EU5 countries. Overall, 194/1151 (16.9%; 95% CI 14.7, 19.1) patients were not actively using treatment, with significantly higher percentages in France [52/250 (20.8%; 95% CI 15.9, 26.4)] versus Germany [31/250 (12.4%; 95% CI 8.6, 17.1); P < 0.05]; additionally, 44/251 (17.5%; 95% CI 13.0, 22.8) patients in the UK, 35/200 (17.5%; 95% CI 12.5, 23.5) in Spain, and 32/200 (16.0%; 95% CI 11.2, 21.8) in Italy were not actively using treatment. Most patients [734/1151 (63.8%; 95% CI 60.9, 66.6)] were hopeful that a new treatment would become available, with the greatest rates in Italy [138/200 (69.0%; 95% CI 62.1, 75.3)] and the lowest in Germany [140/250 (56.0%; 95% CI 49.6, 62.2); Supplementary Fig. S1].

The use of prescription topical creams or ointments [596/1151 (51.8%)] was more common than prescription oral treatments [389/1151 (33.8%)] and surgery or other procedures such as skin grafting [381/1151 (33.1%); Supplementary Fig. S2]. Nevertheless, 500/1151 (43.4%) patients had never used prescription topical or oral medications for their vitiligo; the most common reasons were that a doctor or dermatologist had not prescribed topical or oral medication for their vitiligo [193/500 (38.6%; 95% CI 34.3, 43.0)] and concern about side effects of prescription topical or oral medications [100/500 (20.0%; 95% CI 16.6, 23.8)]. Furthermore, among patients who had previously used prescription topical or oral medications, the most common reasons for not currently using one were concern about side effects [50/176 (28.4%; 95% CI 21.9, 35.7)] and the perception that these medications would not work on their vitiligo [45/176 (25.6%; 95% CI 19.3, 32.7); Supplementary Fig. S3].

The mean (SD) total score on the VIPs [5, 13] 12-item short-form questionnaire was 24.5 (15.6), with patients in Germany [29.3 (14.8)] and France [27.3 (15.7)] reporting significantly (P < 0.01/P < 0.05) higher scores (i.e., more burden) than those in Italy [18.9 (14.4)], Spain [21.1 (14.8)], or the UK [24.3 (16.0)]. Overall, 448/1151 (38.9%) patients said that managing their vitiligo on a daily basis was burdensome, and 468/1151 (40.7%) reported telling themselves that “life would be very different without vitiligo” (Fig. 2), with rates highest in France [120/250 (48.0%); 128/250 (51.2%), respectively] and Germany [121/250 (48.4%); 117/250 (46.8%)].

Patient QoL concerns per the VIPs.* DS included in the 12-item VIPs for patients with darker skin, FS included in the 12-item VIPs for patients with fairer skin, QoL quality of life, VIPs Vitiligo Impact Patient scale. *A summary of responses including “often,” “very often,” and “all the time” is shown. Questions from the VIPs impact rating were completed as validated with some attributes only applying to fairer or darker skin types, although all VALIANT survey participants responded to all questions for simplicity

Vitiligo impacted the behavior of patients, with 620/1151 (53.9%; 95% CI 50.9, 56.8) reporting frequently hiding their vitiligo; rates were highest in Germany [151/250 (60.4%; 95% CI 54.0, 66.5)] and France [146/250 (58.4%; 95% CI 52.0, 64.6); P < 0.05/P < 0.05, respectively, vs Italy, 98/200 (49.0%; 95% CI 41.9, 56.1); and P < 0.01/P < 0.001 vs Spain, 86/200 (43.0%; 95% CI 36.0, 50.2)]. Furthermore, daily activities of patients were often affected by their vitiligo, with patients reporting that their most stressful daily activities were clothing choices [570/1151 (49.5%)], attending social activities [beach/pool, 549/1151 (47.7%)], parties/events [494/1151 (42.9%)], exercising [471/1151 (40.9%)], and work/school [465/1151 (40.4%); Fig. 3].

Activities with frequent* impact of vitiligo on patients’ daily lives. *Patient responses of “often,” “very often,” or “all of the time” on the questionnaire

More than half [671/1151 (58.3%; 95% CI 55.4, 61.2)] of patients in EU5 countries reported diagnosed mental health conditions, including anxiety [305/1151 (26.5%; 95% CI 24.0, 29.1), with highest rates in Italy, 71/200 (35.5%; 95% CI 28.9, 42.6); P < 0.05 vs France, Germany, and Spain] and depression [269/1151 (23.4%; 95% CI 21.0, 25.9), with highest rates in Germany, 79/250 (31.6%; 95% CI 25.9, 37.8), P < 0.05 vs Italy and Spain]. However, although nearly a quarter of EU5 patients were diagnosed with depression, the PHQ-9 [14] indicated that approximately half [571/1151 (49.6%; 95% CI 46.7, 52.5)] of patients had moderate to severe symptoms of depression, with the highest rates in Germany [162/250 (64.8%; 95% CI 58.5, 70.7); Fig. 4].

Moderate to severe depressive symptoms as assessed by the PHQ-9 in patients with vitiligo from EU5 countries. BSA body surface area, PHQ-9 Patient Health Questionnaire–Depression Screener. †Fitzpatrick skin types I–III were characterized as fairer and types IV–VI as darker skin types. ‡Participants with 0% affected BSA (n = 17 from EU5 population) were excluded from the analysis of facial lesions. aP < 0.05 vs Germany; P < 0.001 vs Spain; P < 0.0001 vs Italy. bP < 0.05 vs the UK; P < 0.0001 vs Italy and Spain. cP < 0.01 vs Spain; P < 0.0001 vs the UK. dP < 0.01 vs the UK. eP < 0.0001 vs 1–5% BSA and < 1% BSA. fP < 0.0001 vs Fitzpatrick skin types I–III. gP < 0.0001 vs no facial lesions

Among patients from the EU5 countries, those with > 5% affected BSA, darker skin types, and facial lesions reported significantly greater impact on their QoL versus their counterparts in all reported measures, including higher rates of moderate to severe depressive symptoms (Fig. 4).