Key Points
Question
What are the clinical characteristics and treatment patterns of patients with vitiligo in the US?
Findings
In this retrospective cohort study of 24 949 patients with vitiligo, the face was the most frequently affected area reported; approximately one-third of patients did not receive vitiligo treatment after diagnosis, and among those receiving treatment, topical corticosteroids, oral corticosteroids, and topical calcineurin inhibitors/phosphodiesterase-4 inhibitors were most common. Treatment patterns varied substantially across age groups; a high variability in treatment sequences and a short treatment duration were also observed.
Meaning
Many patients with vitiligo did not receive follow-up treatment, and therapy duration was relatively short.
Abstract
Importance
Vitiligo is a chronic autoimmune disease characterized by loss of pigment in the skin, hair, or both, which can impact quality of life.
Objective
To describe the demographic and clinical characteristics of patients with vitiligo and to characterize vitiligo treatment patterns, by vitiligo extent and age.
Design, Setting, and Participants
This retrospective cohort study analyzed deidentified data from the linked Komodo Healthcare Map and OMNY Health Foundation databases. The linked databases capture health care and pharmacy claims and electronic health record data for patients with vitiligo receiving care in US dermatology practices and across all other settings. The index date was the date of first observed diagnosis of vitiligo during the index identification period (January 1, 2018, to August 31, 2023), allowing for 3 months or more of follow-up. Eligible patients were those with diagnosed vitiligo and 365 days or more of continuous health care plan enrollment (or eligibility proxy for patients with open claims) before index date. Patients missing age data or without any follow-up were excluded. Patients were stratified into cohorts by age and vitiligo percentage of body surface area (BSA) involvement (≤10%, >10%, and no BSA assessment) at index. The data analysis was conducted between April 2024 and August 2024.
Main Outcomes and Measures
Baseline demographics, baseline clinical characteristics, and vitiligo treatment patterns following index date were described.
Results
Of the 24 949 included patients, 1329 (5.3%) had a BSA assessment at index (963 had ≤10% BSA involvement; 366 had >10%). Most patients (n = 21 996 [88.2%]) were 18 years and older and female (n = 14 057 [56.3%]). The face was the most frequently affected area at index, impacting 5482 of 16 674 patients (32.9%) with reported location of vitiligo. Across BSA groups, 27% (6308 of 23 620 without BSA assessment) to 32% (310 of 963 with ≤10% BSA involvement) of patients did not receive treatment for vitiligo during follow-up. The most common treatments following index were topical and oral corticosteroids and topical calcineurin inhibitors/phosphodiesterase-4 inhibitors, with no substantial differences across BSA groups during follow-up. Topical treatments were prescribed more frequently to children and adolescents vs adults, while systemic treatments were prescribed more to adults. High variability across treatment sequences was observed. Median therapy duration ranged from 1.8 (95% CI, 1.6-2.1) months to 4.1 (95% CI, 3.7-4.4) months, for first and second lines of treatment depending on treatment type.
Conclusions and Relevance
This cohort study reported treatment patterns in patients with vitiligo. A high proportion of patients with vitiligo did not receive treatment during follow-up, and therapy duration was relatively short.
This cohort study describes the demographic and clinical characteristics of patients with vitiligo stratified by age and extent of body coverage.
Introduction
Vitiligo is a chronic autoimmune disease characterized by progressive skin depigmentation. It significantly impacts psychosocial well-being, with many patients experiencing depression and anxiety. Given the psychosocial burden, effective treatments are crucial. Currently, ruxolitinib (Janus kinase [JAK] 1/2 inhibitor) cream is the only US Food and Drug Administration–approved treatment for repigmentation in patients 12 years and older with nonsegmental vitiligo. Traditional treatments used off-label include topical corticosteroids (TCS), oral corticosteroids (OCS), topical calcineurin inhibitors (TCI), and phototherapy, but are limited by adverse effects, restricted treatment duration, inconvenience, and limited efficacy. To develop novel therapies, a comprehensive understanding of current treatment patterns is essential. Leveraging linked electronic health records (EHRs) and claims data in the US, this study characterizes demographics, clinical characteristics, and treatment patterns in patients with vitiligo, overall and by vitiligo extent and age.
Methods
This cohort study used linked retrospective claims data (Komodo Healthcare Map) and EHR data from dermatology practices (OMNY Health Foundation) from January 2018 to November 2023 (eFigure 1 in Supplement 1) and followed the STROBE reporting guideline. The study used deidentified secondary data and was exempt from institutional review board approval and US human participant research requirements. Expert determination, according to 45 CFR §164.514(b), was conducted to confirm the dataset met the HIPAA deidentification standard. See eFigure 2 in Supplement 1 for patient eligibility criteria.
Demographics and clinical characteristics were described at vitiligo diagnosis date (index date) or during the 12 months preindex. Postindex treatment types, sequencing (≤5 lines of therapy [LOTs]), duration, and treatment patterns were characterized by drug class and administration route (eTable 1 in Supplement 1). Analyses were conducted overall and by extent of vitiligo coverage based on body surface area (BSA) involvement at or within 60 days after index (≤10%, >10%, or not assessed) and by age groups (children [0-11 years]; adolescents [12-17 years]; adults [≥18 years]). We conducted a sensitivity analysis in patients with at least 12 months of follow-up, characterizing treatments received during the 12 months postindex.
All variables were analyzed using descriptive statistics. Treatment duration was reported as Kaplan-Meier curves with median duration. Patients were censored at the end of continuous enrollment or data availability, whichever occurred first. Analyses were performed using R, version 4.3.3 (R Project for Statistical Computing). The analysis occurred between April and August 2024.
Results
The cohort comprised 24 949 patients (mean [SD] age, 49 [22] years; 14 057 [56.3%] female), including 1652 children (6.6%), 1301 adolescents (5.2%), and 21 996 adults (88.2%). Only 1329 patients (5.3%) had BSA data at index (963 [72.5%] with 10% or less BSA involvement; 366 [27.5%] with greater than 10% BSA involvement) (eFigures 2-3 in Supplement 1). Most patients were commercially insured (n = 14 181 [56.8%]) and diagnosed by dermatologists (n = 11 588 [46.4%]) (Table). Among 16 674 patients (66.8%) with reported location of vitiligo, the face was most frequently affected at index overall (n = 5482 [32.9%]) and in patients with 10% or less BSA involvement (390 of 894 [43.6%]). The arm (176 of 337 [52.2%]) and trunk (177 of 337 [52.5%]) were most common in patients with greater than 10% BSA involvement (Table). The most prevalent psychiatric comorbidities were anxiety (n = 3076 [12.3%]) and depression (n = 2265 [9.1%]), with similar rates across BSA groups and higher rates in adults than adolescents or children (eTables 2-3 in Supplement 1).
Table. Baseline Demographics and Clinical Characteristics Across Body Surface Area (BSA) Groups.
| Characteristic | No. (%) | |||
|---|---|---|---|---|
| Overall (N = 24 949) | BSA ≤10% (n = 963) | BSA >10% (n = 366) | No BSA assessment (n = 23 620) | |
| Age at index, mean (SD), y | 49 (22) | 46 (21) | 53 (19) | 50 (22) |
| Age group, y | ||||
| 0-5 | 505 (2.0) | 13 (1.3) | 2 (0.5) | 490 (2.1) |
| 6-11 | 1147 (4.6) | 55 (5.7) | 15 (4.1) | 1077 (4.6) |
| 12-17 | 1301 (5.2) | 54 (5.6) | 9 (2.5) | 1238 (5.2) |
| 18-44 | 6521 (26.1) | 324 (33.6) | 82 (22.4) | 6115 (25.9) |
| 45-64 | 8002 (32.1) | 309 (32.1) | 138 (37.7) | 7555 (32.0) |
| ≥65 | 7473 (30.0) | 208 (21.6) | 120 (32.8) | 7145 (30.2) |
| Sex | ||||
| Female | 14 057 (56.3) | 552 (57.3) | 206 (56.3) | 13 299 (56.3) |
| Male | 10 687 (42.8) | 396 (41.1) | 158 (43.2) | 10 133 (42.9) |
| Unknown | 205 (0.8) | 15 (1.6) | 2 (0.5) | 188 (0.8) |
| Insurance type | ||||
| Commercial | 14 181 (56.8) | 664 (69.0) | 210 (57.3) | 13 307 (56.3) |
| Medicare | 7593 (30.4) | 210 (21.8) | 119 (32.5) | 7264 (30.8) |
| Medicaid | 2841 (11.4) | 75 (7.8) | 34 (9.3) | 2732 (11.6) |
| Unknown | 334 (1.3) | 14 (1.5) | 3 (0.8) | 317 (1.3) |
| Time between index date and end of continuous enrollment or proxy for open claims, d | ||||
| Mean (SD) | 813 (575) | 313 (264) | 354 (281) | 840 (576) |
| Median (IQR) | 722 (940) | 229 (336) | 265 (435) | 758 (951) |
| Range | 1-2156 | 1-1046 | 1-1105 | 1-2156 |
| Index year | ||||
| 2018 | 3372 (13.5) | 0 | 0 | 3372 (14.3) |
| 2019 | 4569 (18.3) | 0 | 0 | 4569 (19.3) |
| 2020 | 3891 (15.6) | 6 (0.6) | 2 (0.5) | 3883 (16.4) |
| 2021 | 4826 (19.3) | 215 (22.3) | 94 (25.7) | 4517 (19.1) |
| 2022 | 4943 (19.8) | 303 (31.5) | 118 (32.2) | 4522 (19.1) |
| 2023 | 3348 (13.4) | 439 (45.6) | 152 (41.5) | 2757 (11.7) |
| Vitiligo location at indexa | ||||
| Patients with reported location, No. | 16 674 | 894 | 337 | 15 443 |
| Faceb | 5482 (32.9) | 390 (43.6) | 131 (38.9) | 4961 (32.1) |
| Armb | 5248 (31.5) | 266 (29.8) | 176 (52.2) | 4806 (31.1) |
| Trunkb | 4668 (28.0) | 218 (24.4) | 177 (52.5) | 4273 (27.7) |
| Leg/footb | 4282 (25.7) | 222 (24.8) | 139 (41.2) | 3921 (25.4) |
| Handb | 3891 (23.3) | 236 (26.4) | 101 (30.0) | 3554 (23.0) |
| Headb | 2297 (13.8) | 145 (16.2) | 69 (20.5) | 2083 (13.5) |
| Buttock/genitaliab | 1007 (6.0) | 67 (7.5) | 13 (3.9) | 927 (6.0) |
| Diagnosing clinician | ||||
| Dermatologist | 11 588 (46.4) | 329 (34.2) | 124 (33.9) | 11 135 (47.1) |
| Physician assistant | 5587 (22.4) | 343 (35.6) | 133 (36.3) | 5111 (21.6) |
| Other | 3200 (12.8) | 146 (15.2) | 56 (15.3) | 2998 (12.7) |
| General practitioner | 2824 (11.3) | 57 (5.9) | 22 (6.0) | 2745 (11.6) |
| Nurse practitioner | 1430 (5.7) | 68 (7.1) | 27 (7.4) | 1335 (5.7) |
| Unknown | 214 (0.9) | 13 (1.3) | 3 (0.8) | 198 (0.8) |
| Time between index date and initiation of first treatment, d | ||||
| Mean (SD) | 159 (292) | 44 (114) | 80 (161) | 164 (297) |
| Median (IQR) | 14 (181) | 1 (25) | 2 (79) | 16 (189) |
Vitiligo location at index is not mutually exclusive and is based on location of vitiligo recorded on index date or within 60 days after index date.
In those with a reported location around the index date.
Across BSA groups, 27% (6308 of 23 620 without BSA assessment) to 32% (310 of 963 with ≤10% BSA involvement) of patients did not receive treatment for vitiligo during follow-up (Figure 1A). The most common prescribed treatments during follow-up were TCS, OCS, and TCI/phosphodiesterase-4 inhibitors (PDE4i). Among 653 patients with 10% or less BSA involvement receiving treatment, 288 (44%) received TCI/PDE4i, and 173 (26%) received topical JAK inhibitors; among 262 patients with greater than 10% BSA involvement receiving treatment, 87 (33%) and 54 (21%) received TCI/PDE4i and topical JAK inhibitors, respectively. Among patients receiving treatment, 81 patients (31%) with greater than 10% BSA involvement and 170 patients (26%) with 10% or less BSA involvement received OCS. Topical treatments were prescribed more frequently to children and adolescents vs adults, while systemic treatments were prescribed more frequently to adults (eFigures 4-5 in Supplement 1). Results from the sensitivity analysis were similar to the main analysis (Figure 1B; eFigure 4B in Supplement 1).
Figure 1. Bar Graphs of Treatments Received by Patients With Vitiligo Across Body Surface Area (BSA) Groups, Anytime On or After Index Date, and During the 12 Months After Index Date.
JAK indicates Janus kinase; PDE4i, phosphodiesterase-4 inhibitors; TCI, topical calcineurin inhibitors.
aShort-acting injectable corticosteroids include prednisone, methylprednisolone, and triamcinolone.
bLong-acting injectable corticosteroids include betamethasone and dexamethasone.
cTopical JAK inhibitors include ruxolitinib.
dIncludes all patients with complete follow-up for the entire 0- to 12-month time frame.
Among 18 227 patients who initiated a first LOT, 11 745 (64%) initiated a second LOT, 7741 (43%) a third, 5267 (29%) a fourth, and 3676 (20%) a fifth (Figure 2A). The most common first LOTs were TCS (n = 7031 [39%]), followed by OCS (n = 2902 [16%]) and TCI/PDE4i (n = 2860 [16%]). From first to second LOT, TCS monotherapy and TCI/PDE4i use decreased, while systemic corticosteroid use increased. In patients receiving treatment, 512 patients (78%) with 10% or less BSA involvement and 187 patients (71%) with greater than 10% BSA involvement received topical-only treatments as first LOT, and 49 patients (7.5%) with 10% or less and 29 (11%) with greater than 10% BSA involvement received OCS/systemic immunosuppressants (Figure 2B). Across age groups, 1147 of 1271 children (90%), 766 of 942 adolescents (81%), and 9724 of 16 014 adults (61%) received topical-only treatments as their first LOT, and 30 children (2.4%), 72 adolescents (7.6%), and 2800 adults (17%) received OCS (eFigures 4C-5 in Supplement 1).
Figure 2. Bar Graphs of Treatments Received by Patients With Vitiligo by Line of Therapy (LOT) and Most Common First LOT Received by Body Surface Area (BSA) Group.
JAK indicates Janus kinase; PDE4i, phosphodiesterase-4 inhibitors; TCI, topical calcineurin inhibitors.
aLOT is defined as the time between initiation of the medication/regimen and the earliest of its discontinuation (treatment gap of ≥60 consecutive days), switch to another medication/regimen, or addition of a new treatment. If 2 medications were started on the same day, they were considered combination therapy.
bShort-acting injectable corticosteroids include prednisone, methylprednisolone, and triamcinolone.
cLong-acting injectable corticosteroids include betamethasone and dexamethasone.
dTopical JAK inhibitors include ruxolitinib.
eTopical-only treatments include the following 6 treatment regimens: (1) topical corticosteroids, (2) TCI and/or topical PDE4i, (3) topical JAK inhibitors, (4) TCI and/or topical PDE4i plus topical corticosteroids, (5) topical corticosteroids plus TCI and/or topical PDE4i, and (6) topical vitamin D derivatives.
fOther combination includes the following 3 treatment regimens: (1) short-acting injectable corticosteroids plus long-acting injectable corticosteroids, (2) long-acting injectable corticosteroids plus oral corticosteroids, and (3) topical corticosteroids plus oral corticosteroids.
Treatment sequences varied highly (eTables 4-5 in Supplement 1), particularly across age groups, with minimal differences between BSA groups. Therapy duration was relatively short, ranging from a median of 1.8 (95% CI, 1.6-2.1) to 4.1 (95% CI, 3.7-4.4) months for first and second LOTs, differing based on treatment type (eFigure 6 in Supplement 1).
Discussion
This cohort study provides insights into clinical characteristics and treatment patterns of patients with vitiligo. Approximately one-third of patients did not receive treatment after diagnosis, regardless of BSA involvement. TCS, OCS, and TCI/PDE4i were the most common treatments received across BSA groups after diagnosis. TCS and TCI/PDE4i were most often prescribed as first-line therapies, while systemic corticosteroids were more frequently prescribed in later lines. These findings are consistent with previous studies and the international Vitiligo Task Force recommendations, which advise TCS and TCI as first-line treatments for limited disease, with TCI preferred for facial lesions, and TCS as an alternative. Notably, 32.9% of patients in this study had facial lesions. Children and adolescents were more likely to receive topical treatments than adults, consistent with evidence supporting their use in pediatric patients.
Short treatment duration, multiple LOTs, and high variability in treatment sequence were observed. This suggests possible limited long-term treatment options for vitiligo, tolerability concerns and insufficient efficacy with available treatments, and heterogeneity in prescribing patterns. Poor adherence to dermatologic treatments may further explain short treatment durations and multiple LOTs. Topical agents are recommended in patients with limited involvement and often require multiple daily applications (regardless of BSA involvement). In this study, patients with higher BSA involvement were less likely to receive topical treatments, possibly because widespread use is challenging. Thus, topical agents may be less feasible for extensive disease.
Limitations
As OMNY EHR data are collected from dermatologists as part of routine care, location and extent of vitiligo are not systematically recorded for all patients, and BSA was infrequently documented; nearly all patients lacked BSA data, potentially impacting generalizability of stratified results, especially for disease severity distribution. Reasons for treatment decisions and changes were unavailable. Claims data capture dispensed medications and prescribed duration but not actual use, which may affect estimates of treatment duration, especially for topical therapies (eg, based on application frequency, quantity applied). Additionally, the dataset may not capture compounded medications or those not purchased through insurance, such as medications purchased out-of-pocket or with manufacturer discounts. Procedural treatments may be underestimated if received outside the scope captured by claims data (eg, home-based phototherapy). Additionally, treatment patterns were likely influenced by treatment availability during the study period, insurance coverage, or prior treatment exposure. Finally, results may not be generalizable to all patients with vitiligo in the US, because the sample included mainly commercially insured individuals seeking dermatologic care.
Conclusions
In this cohort study, a high proportion of patients with vitiligo did not receive treatment after diagnosis. High variability in treatment sequences and short therapy duration were also observed, highlighting the lack of standardized treatment approaches. Insights from this study could inform future research and clinical practice, potentially improving patient outcomes.
eTable 1. Selected Vitiligo Medications by Drug Class
eTable 2. Baseline Comorbidities Across BSA Groups
eTable 3. Baseline Comorbidities Across Age Groups
eTable 4. Treatment Sequences Among Patients With Vitiligo Who Received Treatment Across BSA Groups, Top 20
eTable 5. Treatment Sequences Among Patients With Vitiligo Who Received Treatment Across Age Groups, Top 20
eFigure 1. Study Design
eFigure 2. Sample Selection Flowchart
eFigure 3. Extent of Vitiligo Among Those With a BSA Assessment Around Index Date, Overall (A) and in Children Aged 0 to 11 Years (B), Adolescents Aged 12 to 17 Years (C), and Adults Aged ≥18 Years (D)
eFigure 4. Treatments Received by Patients With Vitiligo Across Age Groups
eFigure 5. Treatments Received by LOT, Top 10 Treatment Regimens, in Children Aged 0 to 11 Years (A), Adolescents Aged 12 to 17 Years (B), and Adults Aged ≥18 Years (C)
eFigure 6. Probability of Continuing Treatment and Treatment Duration in Patients With Vitiligo
Data Sharing Statement
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
eTable 1. Selected Vitiligo Medications by Drug Class
eTable 2. Baseline Comorbidities Across BSA Groups
eTable 3. Baseline Comorbidities Across Age Groups
eTable 4. Treatment Sequences Among Patients With Vitiligo Who Received Treatment Across BSA Groups, Top 20
eTable 5. Treatment Sequences Among Patients With Vitiligo Who Received Treatment Across Age Groups, Top 20
eFigure 1. Study Design
eFigure 2. Sample Selection Flowchart
eFigure 3. Extent of Vitiligo Among Those With a BSA Assessment Around Index Date, Overall (A) and in Children Aged 0 to 11 Years (B), Adolescents Aged 12 to 17 Years (C), and Adults Aged ≥18 Years (D)
eFigure 4. Treatments Received by Patients With Vitiligo Across Age Groups
eFigure 5. Treatments Received by LOT, Top 10 Treatment Regimens, in Children Aged 0 to 11 Years (A), Adolescents Aged 12 to 17 Years (B), and Adults Aged ≥18 Years (C)
eFigure 6. Probability of Continuing Treatment and Treatment Duration in Patients With Vitiligo
Data Sharing Statement
