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Vitiligo research

Quality of life of adult vitiligo patients using camouflage: A survey in a Chinese vitiligo community

Abstract

 

Background

Vitiligo is an acquired depigmented skin disease resulting in white macules, which may significantly impair the quality of life (QoL) of the patients.

 

Objective

To estimate the QoL in Chinese vitiligo patients using camouflage with a more detailed description, and to identify the possible risk factors related to poor QoL.

 

Methods

An online survey was conducted in vitiligo patients using camouflage from a vitiligo community. Survey questions included demographic, clinical information, dermatology- and vitiligo-specific QoL questionnaires. Multivariate logistic analysis was performed to identify risk factors that related to poor QoL.

 

Results

In total, 884 respondents were included in the analyses, of which 413 (46.7%) were male. The score of DLQI was 5.83±5.75 (mean± SD). Age, gender, marriage status, occupational status, anogenital involvement, patient-perceived severity (presented by VAS score), symptoms as itching, pain, sunburn and koebner phenomenon, total cost of treatment and degree of satisfaction in camouflage therapy were independently associated with DLQI score (p<0.05).

 

Conclusion

Vitiligo has considerable impact on QoL of affected patients in Chinese population even when they were using camouflage. Camouflage might be helpful to improve QoL of the patients.

Introduction

Vitiligo is an acquired chronic depigmenting disorder of the skin, predominantly asymptomatic, manifested by circumscribed depigmented macules and patches due to the disappearance of melanocytes from the epidermis. Vitiligo was recognized in ancient times and is still confused with leprosy in some countries[1]. Numerous studies have revealed that vitiligo has a major effect on the patients’ quality of life (QoL) and negatively affects sexual relations[2].

Cosmetic camouflage is an alternative and complementary option to the traditional standard treatment options, since the effectiveness of the latter are often disappointing with only partial results, and the treatment may last for months or years, before re-pigmentation occur. Preliminary studies have reported that camouflage for patients with vitiligo could improve their quality of life[3,4]. However, all these studies were conducted in small populations, therefore this effect remains to be observed in a larger population. Furthermore, the effect of camouflage on QoL can be significantly influenced by social-psychological factors but has not been studied in Chinese population.

We conducted this study to determine the dermatology-specific QoL in a group of adult vitiligo patients using camouflage in a large Chinese vitiligo community, especially to identify the possible risk factors for poor QoL. We also used a vitiligo-specific QoL questionnaire to illustrate the vitiligo-specific QoL aspects that haven’t been covered by DLQI.

 

Methods

An online survey was conducted from September to December 2016 to assess QoL of adult vitiligo patients using camouflage, and to identify risk factors that related to poor QoL.

 

Recruitment

An online questionnaire was formulated and sent to 8602 consecutive adult patients (age ≥18 years) with vitiligo, in WeChat groups and QQ groups of a vitiligo community, “Leukoplakia Common Home”. Before taking the survey, participants had to sign the online consent form first. Patients who had been using camouflage for more than 1 month were invited. Patients who were younger than 18 years, and who had not been diagnosed by dermatologists were excluded from the study. Information that could identify individual participants was not collected.

The study protocol was approved by the ethics committee of Beijing Tsinghua Changgung Hospital.

 

Measures

 

Demographic and clinical Information.

Demographic and clinical information was collected including gender, age, residential location, marital status, fertility status, educational level, employment status, income, duration of the disease, localizations of vitiligo (e.g. face, neck, scalp, upper arms, forearms, hands, thighs, legs, feet, chest, upper back, waist, axillae, groins, anogenital area), percentage of body surface area (BSA) affected, symptoms, duration of camouflage therapy, degree of satisfaction in camouflage therapy, other previous treatment, and total cost of treatment, as well as visual analogue scale (VAS) to assess the patient-perceived severity.

 

Quality of life.

  We used a dermatology-specific QoL questionnaire, Dermatology Life Quality Index (DLQI) and a vitiligo-specific QoL questionnaire, Vitiligo Impact Scale-22 (VIS-22), to assess the impact of vitiligo. The DLQI contains 10 questions related to patients’ symptoms and feelings, daily activities, leisure, work or school, personal relationships, and treatment over the previous 1 week, and each question has four possible answers scored from 0 to 3. The VIS-22 comprises 22 items covering domains of self-confidence, anxiety, depression, marriage, family worries, social interactions, school/college-related, occupation-related, treatment-related and attitude. Each question has four possible answers scored from 0 to 3. The QoL impairment could be classified into 5 levels according to the total score of DLQI. A DLQI score of 0–1 means no effect at all, 2–5 means a small effect, 6–10 moderate effect, 11–20 large effect, and 21–30 extremely large effect on patient’s life.

 

Statistical analysis

The data was carefully checked for consistency and plausibility to guarantee the quality of data. Normally distributed data were expressed as means±SD, whereas variables with a skewed distribution were reported as median (range). Categorical variables were represented by frequency and percentage. Univariate associations were calculated using Mann-Whitney U test or Kruskal-Wallis test with Bonferroni correction. The outcome variables were the sum score of DLQI. Independent variables were the sociodemographic and clinical characteristics. The independent variables that were univariately associated with the outcome variables (P <0.10) were entered into a stepwise multivariate logistic regression models with dichotomized DLQI (6–30 vs. 0–5) as dependent variable. A value of P < 0.05 was considered significant. All calculations were performed with the statistical package Stata 12.0 (Stata Corp., College Station, Tex.).

 

Results

One thousand nine hundred and twenty four patients had shown a willingness to participate in this study. Of whom 1198 completed the questionnaires. However, 314 were excluded after plausibility checking (Fig 1). Therefore, 884 respondents were included in the final analyses.

Fig 1. Flow diagram of patient enrollment, exclusion, data quality control and data analysis.

(Online completion ensured that there were no missing data in completed questionnaires).

 

https://doi.org/10.1371/journal.pone.0210581.g001

Demographic and clinical characteristics of respondents

The median age of these 884 respondents was 36 years (range 18–83); 413 (46.7%) were male. The visible body areas, such as face, scalp, neck, hands, were affected in most of the patients (n = 829, 93.8%). All but one patient had received previous treatment. The median duration of camouflage therapy was 50 months (range 1–216). The demographic and clinical characteristics were presented in Table 1.

Table 1. Demographic and clinical characteristics of the study group.

Quality of life

 

The DLQI score (mean± SD) was 5.83±5.75 (range 0–30), and 228 (25.8%) patients reported DLQI scores between 0–1, which mean no effect at all; 294 (33.3%) reported small effects; 198 (22.4%), moderate effects; 164 (18.5%), large to extremely large effects. The mean± SD score for the six domains of DLQI were 1.47±1.52 for daily activities, 1.47±1.53 for leisure, 1.25±1.14 for symptoms and feelings, 0.63±1.22 for personal relationship, 0.51±0.88 for work and school, and 0.49±0.79 for treatment. The frequency of the answers to each item of the DLQI and VIS-22 were shown in Fig 2.

Discussion

 

Impact of QoL of vitiligo and the assessment tools

Vitiligo is often perceived as a cosmetic disease, whereas it has a profound and permanent impact on patients’ quality of life (QoL). Numerous studies had revealed the association of stigmatization, distress, depression, anxiety, low self-esteem, social isolation and impact on sexual life with vitiligo[5,6]. DLQI is one of the most widely used dermatology-specific QoL instruments in vitiligo, and the DLQI scores reported by previous studies showed obvious geographical differences, with the highest mean DLQI score of 15.00 reported in a Turkish study[7], followed by two Arab studies (mean score 11.86) [8,9], and ten Indian studies (mean score 9.51)[1016], while the lowest score was 1.82 in one Italian study[17,18]. Therefore, QoL of vitiligo patients is considerably variable according to different skin phototypes and cultures. However, few studies have reported the impact of vitiligo on Chinese patients’ QoL. Although preliminary studies have shown that camouflage can help improving QoL of the patients[3,4], this have never been studied in Chinese patients.

This is the first study to evaluate the impact of vitiligo on Chinese patients who had been using camouflage. To obtain a more comprehensive profile of QoL, we conducted the study in a large vitiligo community using both dermatology-specific and vitiligo-specific QoL instruments.

Since disease-specific instruments could be more sensitive to disease-specific issues, there were four vitiligo-specific Qol instruments had been developed in recent years, including Vitiligo-specific Quality-of-Life instrument (VitiQoL) in the U.S.[19], Vitiligo Impact Patient Scale (VIPs) in France[20], Vitiligo Life Quality Index (VLQI) in Turkey[7], and Vitiligo Impact Scale-22 (VIS-22) in India[13]; and since China and India shared many similarities in culture and belief, we chose the VIS-22 to estimate the vitiligo-specific Qol in our participants. Compared with DLQI, VIS-22 covered the attitude and anxiety about the disease, as well as family worries. Nevertheless, VIS-22 did not have any questions concerned about the symptoms and sexual life.

Impairment of QoL found in Chinese vitiligo patients

Eight hundred and eighty four vitiligo patients who had been using camouflage for more than 1 month were available for final analyses. The mean total score of DLQI was 5.83. There were more than one third of the vitiligo patients experiencing a significant impairment of QoL, as 40.9% of the patients reported a moderate to extremely large QoL impairment assessed with DLQI (score 6–30).

The highest DLQI score was found in ‘daily activities’, followed by ‘leisure’ and ‘symptoms and feelings’. The high scores of VIS-22 added more detailed information of QoL in domains of attitude and anxiety about the disease, such as ‘disease incurable’, ‘worried about new lesions’, ‘the worst disease’, and ‘keep thinking about this disease’; and treatment-related burdens, such as ‘difficulties in adhering to treatment’, ‘the amount of money spent on treatment’; then ‘problems in getting married’ and the feelings of ‘embarrassment’ and ‘helpless’, while there were only small impacts on work/school life or personal relationship.

Risk factors related to QoL

The impact of vitiligo on QoL varies in patients with different clinical and demographic characteristics. In the majority of previous studies, women showed more QoL impairment than men did[18], as did young patients compared to elderly ones[10], married women with vitiligo than singles[21], and patients with involvement on exposed sites than those on unexposed sites[18,2224]. Our results showed that female patients, patients aged less than 30 y/o, patients who were single and without a committed relationship (compared with who were married), patients who were working or seeking work (compared with who retired), patients with anogenital involvement, patients who experienced pruritus or pain, with symptoms as sunburn or koebner phenomenon, and patients who had spent more than 10,000RMB (vs. <10,000 RMB) on treatment had more impaired QoL. Intriguingly, the presence of vitiligo on visible sites, such as face, neck, scalp was not associated with a poor dermatology-specific QoL, which was inconsistent with the previous studies. Several studies showed that patients had higher scores of QoL when having lesions on visible sites[22,23,25,26]. Nevertheless, there were also several studies did not find any relationship between DLQI score and visibility of lesions[6,10,27]. In our study, since most of participants had visible sites involvement (n = 829, 93.8%), the sample size of those without visible sites involvement may be too small (n = 55, 6.2%) to reach statistical significance. Meanwhile, all of our participants had been using camouflage for more than 1 month. QoL has been shown to be improved in vitiligo patients who had lesions on visible sites after use of camouflage[3,4]. Therefore, we supposed that the effectiveness of hiding the visible vitiligo lesions might have abrogated the impact on the patient’s QoL.

We found that the patients with lesions on hands had poor QoL (p = 0.052). These might be explained by the fact that acral lesions of vitiligo were usually resistant to conventional treatment[2830] as well as surgical interventions[31], and the effect of camouflage on these visible sites could not sustain for long because of frequent hand-washing.

Camouflage use and QoL in vitiligo patients

Our result showed a less QoL impairment than that reported by Wang et al.[22], who reported a mean total DLQI score of 8.40 in 101 Chinses vitiligo patients. This may be due to the difference between the target populations of these two studies, as we recruited the patients who had been using camouflage for at least one month, from the community, while in the previous study, dermatology clinic outpatients were enrolled.

There were 67 patients who finished the questionnaire were excluded from our primary analysis, as they used camouflage for less than one month. The mean DLQI score of them was higher than those who had been using camouflage for at least one month (7.22±6.83vs. 5.83±5.75), although the differences between the two groups did not reach statistically significance. One possible reason for the difference might be that continuous camouflage application improved the QoL of vitiligo patients who had lesions on visible sites[3,4]. As another evidence, in our multivariate analysis, the degree of satisfaction after camouflage therapy was positively correlated with QoL of the patients.

Several limitations in our study should be addressed. Firstly, it was an online survey, thus the clinical characteristics such as type of vitiligo, disease activity, and vitiligo extent were unable to be assessed clinically. Secondly, there might be some non-serious respondents participated in the survey, and therefore would increase noise and reduce experimental power of the study[32]. For this reason, we performed a consistency and plausibility check to make sure most of the low-quality data sets submitted by non-serious respondents were excluded from the final analysis[32,33]. Thirdly, although China and India shared many similarities in culture and belief, we found that some items in VIS-22 may not be suitable for our patients, further modification and validation is needed. Furthermore, family history was not assessed and should be considered in future studies.

Despite these limitations, our study demonstrated that vitiligo has a considerable impact on the QoL of affected patients in Chinese population even when they had been using camouflage for at least one month, and camouflage might be helpful to improve QoL of the patients.

Source: 

Transcultural assessment of the quality of life in patients with vitiligo

To the Editor: Vitiligo is associated with significant negative psychologic effects, which have been found
to be worse in Eastern cultures than in Western cultures, likely due to the stigma associated with the
disease.1-3 We sought to assess differences in the quality of life (QoL) of South Asian patients according
to the degree of acculturation in the Western culture to determine if integration into the Western
culture is associated with an improved QoL.

South Asian patients with vitiligo, aged 18 years and above, were recruited from a tertiary care
academic dermatology clinic in this institutional review board-exempted study. African American
patients with vitiligo and matching skin types were recruited as controls. South Asian patients from
Hyderabad, India, were also recruited from a vitiligo specialty clinic. The severity of vitiligo was determined using body surface area measurement. All the patients completed the Dermatology Life Quality
Index questionnaire and the 36-Item Short Form survey (SF-36). The South Asian patients were also
given an acculturation questionnaire with the authors’ permission.4 The degree of integration of
South Asians into the Western culture of the United States of America (USA) was assessed using a series
of questions, including the frequency of the use of native language, consumption of native foods,
observation of native cultural or religious holidays, and cultural self-identification. All subjects who
scored 50% or greater were designated as acculturated. The Chi-square or Fisher’s exact test was used
to compare the ethnic groups based on sex and the presence of acculturation. The Dermatology Life
Quality Index, as well as the component and domain scores of the SF-36, were analyzed using 2-way analysis of variance.

The patients’ demographics are presented in Table I. There were no differences between the
groups in terms of the Dermatology Life Quality Index scores or the SF-36 general health domain.
Regarding the SF-36 physical component scores, women in the USA-acculturated group had significantly higher (better QoL) scores than women from Hyderabad. Men scored significantly higher than women, and the USA-acculturated group scored significantly higher than the Hyderabad group
(Table II). The means were significantly higher in African Americans than in the Hyderabad group for
the physical functioning domain, higher in the USAacculturated group than in the Hyderabad group for
the role physical domain, and higher in men than in women for the bodily pain domain (Supplemental
Tables I to III available via Mendeley at https://doi.org/10.17632/fhfzrwnvmx). For the mental component domain scores, men had significantly higher means than women in the vitality domain.

Our results suggest that patients with greater integration into the South Asian culture experience
a more negative effect on QoL, likely due to the stigma associated with vitiligo. There was a significant
QoL impairment seen in the patients from Hyderabad compared with that in the South Asian
patients in the USA, indicating that moving to the USA may have conferred a protective effect. This
effect was the most significant in acculturated South Asian patients integrated into the American culture.
Furthermore, women perceived greater impairment compared with men. The limitations of this study
include its small sample size, recruitment from only 2 centers, and a referral bias because the patients were recruited from specialty clinics. Future, larger studies on acculturation should be performed to confirmour findings. The results of our study suggest that individuals with vitiligo integrated into the South Asian culture, particularly women, experience an increased burden from their disease. Understanding these differences may help providers in managing South Asian patients with vitiligo.

Demographic characteristics African American South Asian, nonacculturated South Asian acculturated South Asian from

Hyderabad, India

Total 20 31 21 30
Men, n (%) 8 (40%) 12 (39%) 13 (62%) 13 (43%)
Mean age in years 50.4 42 40.2 34.4
Median age in years 41.5 41 41 30
Mean duration of vitiligo in years 10.8 8.65 12.66 10.33
Median duration of vitiligo in years 7.0 4.0 10.0 4.5
Nonsegmental type, n (%) 20 (100%) 29 (94%) 18 (86%) 27 (90%)
Median BSA, % (IQR) 7.05 (0.44, 16.25) 1.00 (0.25, 3.00) 1.88 (0.48, 5.00) 0.70 (0.25, 2.98)

 

Table II. SF-36 physical component scores based on sex and ethnic groups
Ethnicity Sex n Mean 95% confidence interval

Lower bound

Upper bound ANOVA model P values
Ethnicity Sex Interaction of ethnicity and sex
USA-acculturated Male 13 55.05 51.49 58.61 .030 .034 .025
Female 8 59.79 55.26 64.33
USA-nonacculturated Male 12 56.49 52.79 60.19
Female 19 51.14 48.20 54.09
African American Male 8 57.05 52.51 61.58
Female 12 51.79 48.09 55.49
Hyderabad Male 13 54.53 50.97 58.09
Female 17 48.92 45.81 52.03

 

interaction: women in USA-acculturated group versus women in Hyderabad group, P ¼ .0046; P values \.05 were statistically significant.

ANOVA, Analysis of variance; SF-36, 36-item short form survey; USA, United States of America.

 

recruited from specialty clinics. Future, larger studies on acculturation should be performed to confirm our findings. The results of our study suggest that individuals with vitiligo integrated into the South Asian culture, particularly women, experience an increased burden from their disease. Understanding these differences may help providers in managing South Asian patients with vitiligo.

Amrita Hans, MD,a Keerthi A. Reddy, MD,a Samantha M. Black, BS,a Jamael Thomas, MD, MPH,a Orlando Martinez-Luna, BSA,a Jacqueline McKesey, MD, MS,a Linda S. Hynan, PhD,b and Amit G. Pandya, MDa

From the Department of Dermatology, University of Texas Southwestern Medical Centera and Departments of Population & Data Sciences (Biostatistics) and Psychiatry, University of Texas Southwestern Medical Center, Dallas, Texas.b

Funding sources: None.

IRB approval status: This study was reviewed by the Institutional Review Board of the University of Texas Southwestern Medical Center, Dallas, Texas, and determined to be exempt from review.

Reprints not available from the authors.

Correspondence     to:     Amit     G.      Pandya,      MD,

Department of Dermatology, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, Dallas, TX 75390-9069

E-mail: amit.pandya@utsouthwestern.edu

Conflicts of interest None disclosed.

REFERENCES

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  2. Thompson AR, Clarke SA, Newell RJ, Gawkrodger DJ. Vitiligo linked to stigmatization in British South Asian women: a qualitative study of the experiences of living with vitiligo. Br J Dermatol. 2010;163(3):481-486.
  3. Ongenae K, Van Geel N, De Schepper S, Naeyaert JM. Effect of vitiligo on self-reported health-related quality of life. Br J Dermatol. 2005;152(6):1165-1172.
  4. Bharmal N, Hays RD, McCarthy WJ. Validity of temporal measures as proxies for measuring acculturation in Asian Indian survey respondents. J Immigr Minor Health. 2014;16(5): 889-897.

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