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[ZKKL] Academic Sharing | Research Advances in Quality-of-Life Assessment Scales for Patients with Vitiligo
Release time:2019-11-19
Reprinted from: Chinese Journal of Leprosy and Dermatological Diseases, Vol. 35, No. 5, May 2019.
Authors: Zhao Huan, Yang Baoqi
[Abstract] Although vitiligo does not threaten patients’ lives, its chronic course and recurrent flares impose substantial psychological stress, interfere with social interactions, and markedly reduce patients’ quality of life. Assessing patients’ quality of life using standardized quality-of-life scales is a widely employed approach for investigating the disease’s impact. This article reviews recent advances in the application of quality-of-life assessment tools for patients with vitiligo.
[Keywords] Vitiligo; Quality of Life; Assessment Scales
Vitiligo is a common pigment‑loss skin disorder characterized by the loss of melanocytes in the skin, mucous membranes, and hair follicles. Its global prevalence is approximately 1%, with a recent upward trend. The etiology and pathogenesis of this condition remain unclear; prevailing theories include genetic factors, immune dysregulation, melanocyte self‑destruction, neurochemical influences, and oxidative stress. Vitiligo can affect individuals of all racial backgrounds and age groups, with lesions occurring on virtually any part of the body. Although it is not life‑threatening, its chronic course and recurrent flares impose substantial psychological burden, interfere with social interactions, and often significantly impair patients’ quality of life. Consequently, assessing quality of life is of paramount importance. This review summarizes recent advances in the application of quality‑of‑life assessment tools for vitiligo.
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Definition of Quality of Life
Quality of life is also referred to as survival quality or life quality. 1993 The World Health Organization (WHO) Quality of Life Research Group defines quality of life as the individual’s perception of their position in life within the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns. In the medical field, the concept of health-related quality of life emerged in the 1970s, primarily assessing how disease and treatment impact daily living across three domains: physical, psychological, and social functioning. The impact of quality. Quality-of-life questionnaires, as an important tool for assessing quality of life, are currently widely used.
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The Impact of Vitiligo on Patients’ Quality of Life
Vitiligo is a chronic condition, and patients’ quality of life is often compromised by the disease’s impact on appearance and its prolonged course. Consequently, assessing disease severity solely based on metrics such as the percentage of body surface area affected is inadequate. Studies indicate that more than 50% of respondents report a significant negative impact of vitiligo on their quality of life, with “seeking a cure or effective treatment” and “long-term therapy” exerting the greatest burden. Nevertheless, research on the quality of life of individuals with vitiligo remains limited; only 9% of studies include it as a primary or secondary outcome measure. Among pediatric patients, such emotional instability is also frequently observed.
Overall, adolescent patients (15–17 years old) report a significantly lower quality of life than children (7–14 years old). Furthermore, studies have shown that parents of children with vitiligo may experience psychological distress or social stress related to their child’s condition, which in turn diminishes their own quality of life. Therefore, dermatologists are encouraged to increase awareness of the mental health implications of the disease, thereby helping to improve the quality of life of affected children’s families.
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Quality of Life Assessment Methods and Their Application in Patients with Vitiligo
Given the growing patient demand for quality of life, assessing quality of life has become a crucial criterion for selecting treatment strategies and evaluating therapeutic outcomes. Accurate evaluation of patients’ quality of life is therefore of paramount importance in clinical practice. Quality-of-life assessment is typically conducted through self-reported questionnaires, which can be categorized into three types: generic scales, disease-specific scales, and vitiligo-specific scales.
3.1 General‑Purpose Quality‑of‑Life Scales Commonly used general‑purpose quality‑of‑life scales include the Medical Outcomes Study 36‑Item Short Form Health Survey (SF‑36), the Nottingham Health Profile (NHP), and the World Health Organization Quality of Life Assessment Instrument (WHOQOL‑100). Currently, the SF‑36 is frequently employed in clinical trials. The SF‑36 comprises 36 items that assess quality of life across eight domains: physical functioning, bodily pain, vitality, social functioning, role‑physical, role‑emotional, mental health, and general health. Higher scores indicate better quality of life. Ghajarzadeh et al. conducted a comparative study using the SF‑36 to evaluate quality of life in patients with vitiligo, psoriasis, and alopecia areata. The results showed that vitiligo patients had a higher overall quality‑of‑life score (mean score 63.80) than psoriasis patients (mean score 59.80), but lower than alopecia areata patients (mean score 68.01). However, the SF‑36 primarily emphasizes physical disability associated with disease and does not adequately address psychological factors such as feelings of shame or embarrassment. In clinical trials, it has been found that the SF‑36 fails to distinguish between treatment and placebo groups with respect to these influencing factors.
3.2 Dermatological Specialized Scales
3.2.1 The Dermatology Life Quality Index (DLQI) and the Children’s Dermatology Life Quality Index (CDLQI) The DLQI comprises 10 items and is currently widely used to assess quality of life in various skin diseases. Patients respond to these 10 questions based on their condition over the past week, with a total score ranging from 0 to 30; higher scores indicate poorer quality of life. In a study comparing quality of life among patients with chronic skin conditions using the DLQI, it was found that patients with vitiligo had a lower quality of life (mean DLQI score of 7.0) than those with psoriasis (mean DLQI score of 6.7) or rosacea (mean DLQI score of 4.3), but higher than those with atopic dermatitis (mean DLQI score of 8.5).
3.2.2 Skin Index (Skindex) The Skindex questionnaire was originally developed by Chren et al., comprising 61 items that assess both psychosocial and physiological aspects. Subsequently, Chren and colleagues simplified and refined the instrument, reducing it to 30 items, known as the Skindex‑29. This revised version consists of 29 questions across three domains—symptoms, emotions, and functioning—offering improved discriminative power and assessment accuracy compared with the original 61-item scale, while also shortening completion time. Respondents are asked to report the impact of their skin condition over the past four weeks; each item is scored from 0 (never) to 5 (always), yielding a total score ranging from 0 to 100. A study using the Skindex‑29 to evaluate quality of life in patients with vitiligo found that 74.6% were concerned about worsening skin symptoms, 62.9% feared having severe skin manifestations, 55.6% worried that their condition might inconvenience family members, and 53.5% felt depressed due to their skin condition. In 2002, the Skindex‑16 was introduced, further streamlining the scale relative to the Skindex‑29. This version eliminated items with largely identical responses and placed greater emphasis on assessing the distress caused by the disease rather than its frequency. The Skindex‑16 comprises 16 items, covering symptoms (items 1–4), emotions (items 5–11), and functioning (items 12–16), with scores ranging from 0 (never distressing) to 6 (always distressing). Today, this scale is widely employed in quality-of-life assessments for various dermatologic conditions.
3.3 Scale Specific to Vitiligo Although general dermatological scales can assess
These tools assess the overall impact of vitiligo on patients’ quality of life; however, generic scales have limitations and often fail to accurately quantify the extent and specific dimensions of the disease’s effects, lacking sufficient specificity. Below, we introduce three vitiligo-specific scales that have been developed and validated in recent years.
3.3.1 Vitiligo-Specific Quality of Life Scale (Vitiligo‑Specific)
quality-of-life instrument, VitiQoL) In 2013, Lily et al. [27] developed and validated a vitiligo-specific quality-of-life scale (VitiQoL: vitiligo-specific quality-of-life instrument). The VitiQoL questionnaire consists of 15 items, with response scores ranging from 0 (never) to 6 (always), yielding a total score from 0 to 90. Additionally, the questionnaire includes a 16th item that uses a 0–6 scale (0 = no skin disease; 6 = worst possible condition) to assess the severity of vitiligo, though this item is not included in the total score. Originally developed in English, the scale underwent reliability and validity testing in a U.S. population. Its internal consistency, as measured by Cronbach’s alpha, was 0.935, indicating excellent internal consistency. Convergent validity was confirmed through correlations between VitiQoL and other self‑report measures (Skindex‑16, r = 0.816; DLQI, r = 0.832). VitiQoL is a patient‑centered, vitiligo‑specific assessment tool that offers greater specificity than generic scales, enabling evaluation of disease status, disease burden, and treatment outcomes, while also being suitable for clinical trial research. To date, the scale has been translated into Portuguese and Persian, with its reliability and validity independently established in Brazil and Iran, respectively. Recently, Catucci et al. used the Portuguese version of VitiQoL to assess the quality of life among patients with vitiligo, finding a strong correlation between VitiQoL and DLQI scores (r = 0.81; P < 0.001), with women, individuals with psychiatric comorbidities, and adolescent patients exhibiting greater impairment in quality of life.
3.3.2 Vitiligo Impact Scale–22 (Vitiligo Impact Scale–22,
VIS‑22) In 2014, Gupta et al. [31] developed and validated the Vitiligo Impact Scale‑22 (VIS‑22). The scale comprises 23 items: the first 19 are common items, while the remaining four are selectively administered based on whether the patient is currently married and whether they are employed or studying. Each item is scored on a four-point scale—0 = no impact, 1 = slight impact, 2 = moderate impact, 3 = severe impact—yielding a total score ranging from 0 to 66; higher scores indicate poorer quality of life. Reliability and validity were assessed in 161 patients, with an internal consistency reliability of 0.9053. Criterion‑related validity demonstrated a strong association between the VIS‑22 and the Visual Analogue Scale (VAS) (r = 0.7076), and convergent validity revealed moderate correlations with both the Dermatology Life Quality Index (DLQI) (r = 0.71) and the Skindex‑16 (r = 0.72).
Recently, a team in India applied the standardization method to the VIS‑22 scale. A clinically relevant study was conducted, using the Global Question (GQ) scale as a reference to compare VIS‑22 and DLQI in patients with vitiligo. The degree of correlation with patients’ quality of life. The results indicate that VIS‑22 exhibits a higher correlation (VIS‑22, r = 0.77; DLQI, r = 0.69) and greater agreement (VIS‑22, 51.6%; DLQI, 36.1%; p < 0.001) with GQ than the DLQI. Thus, VIS‑22 can more accurately assess the extent to which vitiligo impacts patients’ quality of life.
3.3.3 Vitiligo Impact Patient Scale (VIPs) This scale was developed and validated in 2016 by Salzes et al., focusing on how different skin phototypes influence patients with vitiligo. It comprises 29 items: 19 are common to all skin types, while 3 are specific to skin types I–III (VIP‑FS) and 7 are specific to skin types IV–VI (VIP‑DS). Scores range from 0 to 110 for skin types I–III and from 0 to 130 for skin types IV–VI, with final scores converted to a percentage scale. The internal consistency reliability of the scale is 0.94. Regarding convergent validity, VIP‑FS and VIP‑DS were correlated with the Dermatology Life Quality Index (DLQI) and the SF‑12, respectively. VIP‑FS and VIP‑DS showed strong correlations with the total DLQI score (VIP‑FS, r = 0.84; VIP‑DS, r = 0.82), while both subscales exhibited moderate negative correlations with the total SF‑12 score (VIP‑FS, r = −0.54; VIP‑DS, r = −0.55). To date, this scale has not been developed or validated in other countries or languages, nor have any clinical applications of the instrument been reported.
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Use of Measuring Instruments
General‑purpose quality‑of‑life measures are suitable for preliminary screening and help provide a comprehensive overview of the overall health status of the general population. However, compared with disease‑specific instruments, they lack sufficient sensitivity to detect changes following treatment. Disease‑specific dermatological measures can highlight the distinctions between skin disorders and conditions affecting other systems, enable comparisons of how different skin diseases impact patients’ quality of life, and track changes in quality of life before and after treatment for a given condition. Nevertheless, their specificity is relatively limited when contrasted with disease‑specific scales. Scales tailored specifically to vitiligo are better suited to address the unique challenges faced by individuals with this condition; for example, such scales exclude items related to skin pain, pruritus, or heightened skin sensitivity—issues that are not relevant to vitiligo—and instead focus on psychological concerns and the burden imposed by the disease. Consequently, disease‑specific scales are more appropriate for assessing quality of life in the context of particular conditions and facilitate clinicians’ ability to compare pre‑ and post‑treatment changes in patients’ quality of life.
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Current Limitations and Future Prospects
Compared with diseases in other disciplines, skin conditions are more visually apparent and easier to detect. Because patients are often observed by others, efficacy cannot be assessed solely based on survival rates or similar metrics. Moreover, dermatological conditions typically have a prolonged course, and many skin diseases are closely linked to psychoneurological factors. Therefore, while treating the patient’s illness, it is equally important to address the psychological impact of the disease, thereby improving the patient’s quality of life. At present, there are relatively few specific assessment scales for vitiligo, and research on such scales in China remains exceedingly limited. Patients Differences in educational level and cultural background can affect respondents’ understanding of questionnaires; therefore, developing and validating a白癜风‑specific assessment scale for the Chinese population may emerge as a promising direction for future research.
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