Burden of vitiligo on Chinese patients: an online survey

To the Editor: Vitiligo is a chronic disease that impacts many aspects of a patient's life. The prevalence of vitiligo has been increasing, and currently involves up to 0.5% to 2% of all races worldwide.^[1] Although this condition very rarely produces any direct physical discomfort, the cosmetic problems and disfiguring appearance resulting from the depigmented lesions severely affect the quality of life (QoL) in these individuals.^[2]

In this report, participating dermatologists invited vitiligo patients (>16 years of age) to complete a detailed online questionnaire. The study protocol was approved by the ethics committee of the First Hospital of China Medical University (No. 2020-266). Before participation in this survey, patients were required to submit an online informed consent form. The Dermatology Life Quality Index (DLQI) was used to evaluate patients’ perceptions regarding their QoL due to the disease, with higher DLQI scores indicating greater impairments in their QoL.

From a total of 2180 invited patients, 1662 completed the questionnaires resulting in a 76.2% response rate. The gender of the patients was equally represented and not significantly different (P = 0.71) with 823 males (49.5%) and 839 females (50.5%) participating. The mean age of the patients was 38.8 ± 11.5 (range: 16.0–86.0) years.

A family history of vitiligo was reported in 217 of these patients (13.1%). The mean age of vitiligo onset was 24.3 ± 12.8 years, indicating that vitiligo predominantly affects the younger population. Mean duration of vitiligo was 14.6 ± 10.9 years. Symptoms of vitiligo primarily presented at exposed sites (55.4%, n = 921) and were initially observed mostly in summer (42.6%, n = 708) and spring (40.0%, n = 664). We speculated that this time of onset suggests a link between vitiligo and overexposure to sunlight or the isomorphic phenomenon following local trauma. Additional information on the details of demographic and clinical characteristics of these patients is contained in Supplementary Tables 1 and 2, https://links.lww.com/CM9/B337.

The majority of these patients, 79.0% (n = 1313), attributed specific causes as being related to their disease. Life stresses were reported as the most common causes (26.5%, 441/1662), followed by sleep disturbances (17.4%, 290/1662). Such responses provide strong evidence in support of psycho-neuro systems as being involved in the occurrence and development of vitiligo.^[3]

Results of our survey revealed that 19.0% (n = 316) of these patients experienced other vitiligo-related comorbidities, with thyroid disorders being the most prevalent (6.7%, n = 111). This finding convincingly suggests that vitiligo and autoimmune thyroid diseases may share an etiologic basis and highlights the need for thyroid screening before and during the treatment of vitiligo.^[4] Other recorded disorders related with vitiligo included diabetes (2.6%, n = 44), asthma (2.5%, n = 41), atopic dermatitis (1.6%, n = 26), alopecia areata (1.3%, n = 21), and anemia (1.0%, n = 17).

Over half of these patients (54.6%, n = 907) received internal medication for the management of their disease, with Traditional Chinese Medicine (TCM) being the most often administered internal treatment option (24.3%, n = 404). TCM is often prescribed as a ready-made or personalized cocktail mix comprised of various ingredients that are particularly favored and accepted in China due to their claims of fewer side effects. Systemic steroids were utilized less than TCM and immunomodulators, which may be related to an increased knowledge of adverse effects resulting from the administration of systemic steroids. Aside from TCM, other treatments consisted of tacrolimus, being the most commonly used topical treatment (22.6%, n = 375), followed by camouflage (19.9%, n = 331) and topical steroids (17.5%, n = 291). Among all of these treatment options, camouflage was found to comprise the longest average duration of treatment (33.9 months) [Supplementary Figure 1, https://links.lww.com/CM9/B337].

With regard to the level of satisfaction of vitiligo treatments, camouflage was rated as the most satisfactory therapy (1.47 ± 0.85), followed by narrowband UV-B phototherapy (0.93 ± 0.85), and 308 nm excimer laser (0.89 ± 0.86). Patients were significantly less satisfied with the use of topical steroids (0.59 ± 0.76) as compared with both topical calcineurin inhibitors (P = 0.001; Figure 1). In view of these findings, we concluded that vitiligo patients prefer treatments that are generally considered safe options, regardless of their efficacy.

Figure 1: Satisfaction levels of all treatment options as ordered by mean scores obtained for each treatment. UVA: Ultraviolet A; UVB: Ultraviolet B.

These patients spent between RMB 3000 and 200,000 yuan for their vitiligo treatments, with the majority (23.8%, n = 395) spending RMB 10,000 to 30,000 yuan. The minimal cost as reported by 14.3% (n = 238) was <RMB 3000 yuan while the maximal expenditure of RMB 200,000 yuan was in 1.5% (n = 30) of these patients. As some of these patients have monthly incomes of <RMB 3000 yuan (around US$ 500) and given that average incomes ranged between RMB 3000 yuan and 10,000 yuan (around US$ 500 and 1500), expenses for these vitiligo therapies can result in unsustainable levels of expenditures, which may be linked to the low QoL experienced by these patients as reported previously.^[5] Patients with longer disease durations, and those with generalized and vulgaris types as well as exposed vitiligo lesions were found to spend more on their treatments (P < 0.05). There were no statistically significant gender differences in expenditures on vitiligo (P = 0.26).

Responses from the vitiligo patients of this report indicated that their QoL was moderately affected by their vitiligo (mean DLQI score 9.43 ± 7.47). The most affected item reported by these patients was a disturbance in their overall emotional state (1.46 ± 1.00), followed by disruptions in social and leisure activities (1.41 ± 1.03), and problems selecting clothes that could cover their lesions (1.25 ± 1.10; Supplementary Figure 2, https://links.lww.com/CM9/B337).

A potential limitation of this study was the recruitment of participants that were active internet users. Such a sample may be biased and thus may not be adequately representative of the general population. Despite this limitation, our study clearly reveals that vitiligo significantly influences many aspects of these patients’ lives. Accordingly, dermatologists need to address these issues in the early stages of vitiligo onset and provide appropriate support to avoid or limit future consequences. In particular, provisions associated with the numerous treatment choices most frequently utilized by these patients, as well as the differences in satisfaction as identified in this study, may aid dermatologists in making their decisions and recommendations regarding treatment choices for these patients.

Acknowledgments

None.

Funding

Our work was supported by Capulin (Beijing Sanheli Cosmetics Technology Co., Ltd.). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Conflicts of interest

None.