Assessment of quality of life in vitiligo patients in terms of clinical severity and psychological burden in a tertiary care hospital: An observational study
Cyril Sajan, Priyanshi R Shah, Rashmi Mahajan, Vikas Chandrakar, Disha Baxi, Hiral Patel
Department of Pharmacy Practice, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat, India
Correspondence Address:
Cyril Sajan
Department of Pharmacy Practice, Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujarat
India
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/jss.jss_119_22
Background: Vitiligo is characterized depigmented macules and patches over the skin. It has a major impact on the quality of life (QoL) of patients, many of whom feel distressed and stigmatized by their condition. Aim: To assess QoL in vitiligo patients in terms of clinical severity and psychological burden. Materials and Methods: An observational study on 60 patients with age ≥16 years was conducted at an outpatient department of a tertiary care hospital. Data were collected in a predesigned pro forma. The QoL of patients and family members was assessed using Dermatology Life Quality Index (DLQI) and Family DLQI (FDLQI), respectively. The clinical severity was measured using Vitiligo Area Severity Index (VASI) and psychological burden by Vitiligo Impact Score-22 (VIS-22) questionnaire. Results: Sixty patients were included in the study. The mean age was 35.27 ± 2.24. Male-to-female ratio was 1.1:1. About 51.7% of patients were married. Majority of patients were students (30%). The time of presentation after disease onset was 5 years. About 20% of subjects had positive family history. The common sites were face (75%), lower limb (71.67%), and upper limb (60%), with leukotrichia in 11.7% of patients. The mean VASI score at baseline and at 1-month of follow-up after starting treatment was 4.11 ± 0.38 and 3.59 ± 0.58, respectively. The mean DLQI, FDLQI and VIS-22 score were 11.73 ± 0.80, 10.58 ± 0.71, and 37.32 ± 1.53, respectively. VIS-22 and VASI score correlated with changes in DLQI (P < 0.059). Conclusion: Vitiligo largely impairs the QoL of patients. The more the clinical severity (high VASI score), the higher the psychological burden, impairing QoL of patients, and family members.
Keywords: Dermatology life quality index, quality of life, vitiligo area severity index, vitiligo impact score-22 questionnaire, vitiligo vulgaris
Vitiligo is an acquired, primary, progressive melanocytopenia with unknown etiology.[1]
Histologically, there is an absence of melanocytes in the involved skin.[2] There are several types of vitiligo-generalized vitiligo vulgaris, segmental vitiligo, and acrofacial vitiligo [Figure 1]a, [Figure 1]b, [Figure 1]c Clinically, it is described as circumscribed achromic macules which are often associated with leukotrichia [Figure 1]d of the involved skin.[3]
Figure 1: (a) Segmental vitiligo. (b) Generalized vitiligo vulgaris. (c) Acrofacial vitiligo. (d) LeukotrichiaGlobally, vitiligo affects 0.1%–1.3% population. The prevalence in India is 3%–4%. Incidence is highest in Mexico and India, maximum being in Rajasthan and Gujarat (8.8%).[4] The disease affects patients of either sex.[5] It is associated with familial factors, risk for first-degree relatives increased by seven to ten-fold as compared to general population.[6]
Vitiligo is a psychologically devastating condition, especially in darker individuals.[7] Patients often suffer from poor body image and low self-esteem[8] which leads to impairment in quality of life (QOL). This may influence them economically as well.[9] Family members of these patients not only undergo financial stress but also social and emotional trauma.[10]
The chronic nature of disease, lack of uniform effective therapy, and unpredictable course of disease is typically demoralizing for patients suffering from vitiligo. It is important to acknowledge the psychological components of this disease. Appropriate treatment will enhance the QOL in vitiligo patients.
Materials and MethodsThis prospective, observational study was carried out in the department of Dermatology in a tertiary care hospital at Vadodara, Gujarat. Institutional Ethics Committee approval was obtained before study initiation. Sixty patients were included to assess impairment in their QOL due to vitiligo over a period of 4 months (October, 2019–March, 2020).
All the patients ≥16 years of age diagnosed with vitiligo and gave informed consent were included in the study. Informed consent from parents was obtained for patients between 16 and 18 years of age. Patients who could not comply with the study protocol, having postinflammatory leukoderma, a poor general condition, and coexisting psychiatric illness were excluded from the study. Clinical photograph of all patients was taken giving utmost importance to the patients' privacy.
On the first visit, demographic details, history of vitiligo, and other coexisting diseases including treatment history were recorded. Complete dermatological examination was performed and documented. The clinical severity of vitiligo of all patients was assessed using Vitiligo Area Severity Index (VASI) scale. QoL of patients and their family members was assessed using Dermatology Life Quality Index (DLQI) score and Family DLQI (FDLQI) score. The psychological impact of vitiligo on the patient's QoL was assessed using Vitiligo Impact Score-22 (VIS-22) questionnaire. After 1 month of treatment reduction and improvement in clinical severity of vitiligo were calculated using the VASI scale.
VASI score was calculated using the formula: VASI=Σ (all body sites) (hand units) × (residual depigmentation). Where 1 hand unit is considered 1% of the body and possible values of depigmentation are 0%, 10%, 25%, 50%, 75%, 90%, or 100%.[11]
VIS-22 (a disease-specific, modified version of the VIS questionnaire) consists of 22 easily comprehensible questions: 19, common to all patients and one each for married, unmarried, working, or studying. Individual responses are scored from 0 to 3. In this, a higher score indicates a worse QoL. This questionnaire is validated in the Indian population.[12]
DLQI was used to assess the QOL of vitiligo patients. DLQI is an assessment, introduced by Prof A Y Finlay. This includes 10 items on the patient's symptoms, feelings, routine activities, kind of clothes, social or leisure activities, physical exercise, educational activities, sexual activities, and interpersonal relationships with 0–30 points score.[13]
Statistical method
All the quantitative data were represented in percentage (%) and mean ± standard deviation. Comparative statistical differences were calculated using appropriate parametric tests. The categorical data were represented in the median and comparative statistical differences were calculated by using appropriate nonparametric statistical tests (Chi-square test and Independent t-test). Graphical representation was used for a better understanding of data. P ≤0.5 was considered statistically significant.
ResultsAmong 60 patients 53.33% were male and 64.67% were female. Among all age groups more patients found in the age group of 16–30 years (48.33%). About 51.67% of patients were married and 48.33% of patients were unmarried. Considering occupation, students (30%), housewives (23.33%), and farmers (20%) were more in our study. More patients had vitiligo during 1–2 years (21.67%) and 2–5 years (20%). Only 20% of patients had family history of vitiligo [Graph 1].
Vitiligo area severity index score
The clinical severity of vitiligo was assessed using the VASI score. The mean VASI score was 4.11 ± 0.38 at baseline and 3.59 ± 0.58 after 1 month of treatment, with an improvement of 0.52 ± 0.043.
Although there was no statistically significant difference of VASI scores with gender and age group, female patients (4.11 ± 0.38) and patients with age >60 years had higher clinical severity (4.33 ± 0.5). Patients without a family history of vitiligo had more clinical severity (4.11 ± 0.39).
The association of clinical severity of vitiligo with gender, age, family history, and dermatological sites as well as its statistical significance is described in [Table 1].
Table 1: Association of clinical severity of vitiligo with gender, age, family history and dermatological sites along with its statistical significanceDermatology life quality index score
The mean DLQI score was 11.73 ± 0.80.
There were a high number of patients (46.67%, n = 28) whose QOL was largely impaired (DLQI score = 11–20), while some patients (25%, n = 15) had moderately impaired QOL (DLQI score = 6–10), some patients (15%, n = 9) were having a mild impairment in their QOL (DLQI score = 2–5), very small number of patients (3.33%, n = 2) had no significant change in their QOL (DLQI score = 0–1) and few patients (10%, n = 6) having an extremely large effect on their QOL (DLQI score = 21–30).
Association of all factors with DLQI and its statistical significance is given in [Table 2].
Table 2: Association of impairment in Quality of Life due to vitiligo with all factors along with its statistical significanceVitiligo impact score-22 questionnaire
The psychological impact of vitiligo was assessed using Vitiligo Impact Scale-22 (VIS-22) questionnaire. Three categories were made to interpret the VIS score, 0–22 denoting mild, 23–44 moderate, and 45–66 severe psychological burden respectively. In the present study, higher number of patients had VIS-22 score 23–44 (58.3%, n = 35), followed by 45–60 (33.3%, n = 20) and 0–22 (8.3%, n = 5).
The association of the VIS-22 questionnaire with all factors and its statistical significance is described in [Table 3].
Table 3: Association of psychological impact of vitiligo with all factors along with its statistical significanceFamily dermatology life quality index score
The mean FDLQI score was 10.58 ± 0.71.
There was greater number of family members (46.67%, n = 28) having large impairment in QOL (FDLQI score = 11–20). Moderate (FDLQI score = 6–10) and mild (FDLQI score = 2–5) impairment in QOL was found in 30% (n = 18) and 18.33% (11) patient's family members, respectively. Family members of few patients had extremely large impairment (FDLQI score = 21–30) in QOL (5%, n = 3). In the present study, impairment in QOL was found in all family members.
Association between patient-related factors with FDLQI and its statistical significance is given in [Table 4].
Table 4: Association of Family Dermatological Life Quality Index with all patient related factors and its statistical significanceAssociation between family-related factors with FDLQI and its statistical significance is given in [Table 5].
Table 5: Association Family Dermatological Life Quality Index with of all family related factors and its statistical significanceOther factors which lead to impairment in family member's QOL are given in [Graph 3].
The association between clinical severity with impairment in QOL and the psychological impact of vitiligo is given in [Table 6] and [Table 7].
Table 6: Association of Vitiligo Area Severity Index with Dermatology Life Quality Index scoreTable 7: Association of Vitiligo Area Severity Index with Vitiligo Impact Score-22 questionnaireAssociation between DLQI score with FDLQI score is given in [Table 8].
Table 8: Association of Dermatology Life Quality Index with Family Dermatological Life Quality IndexStatistical significance of VASI, VIS-22, and FDLQI with DLQI is given in [Table 9].
Table 9: Statistical significance of Vitiligo Area Severity Index, Dermatology Life Quality Index, Vitiligo Impact Score and Family Dermatological Life Quality Index DiscussionThe present study was conducted to assess the QOL of vitiligo patients in terms of clinical severity and psychological impact due to vitiligo.
In the present study, out of 60 patients, 53.33% were male and 46.67% were female. The mean age in each gender was almost similar (males = 35.27 ± 2.24, females = 35.24 ± 2.24). Greater number of married patients (51.67%) presented to the hospital compared to unmarried (48.33%). Among unmarried, the maximum was between the age of 16 and 20 years (30%), followed by 21–30 years (18.33%). Students (30%) formed the largest group, followed by housewives (23.33%). These findings were similar to a study conducted by Patvekar et al.[11] In a case series, 70% of the studied population had age below 30 years.[12] In a study conducted in Egypt, the mean age of all vitiligo patients was 32.8 ± 13 years.[14] Another study conducted in Western Nigeria found 25–35 years as the peak age for vitiligo.[15]
In our study, the duration was 1–2 years in 21.67%, followed by 2–5 years in 20%. A study conducted by Gopal et al. showed that the maximum number of subjects had vitiligo for 5 years.[16]
In our study, 20% of patients had a positive family history. Similarly, two patients out of 100 had a positive family history in a study of Patvekar et al.[11]
The most common dermatological site was found to be the face (75%), lower limb (71.67%), and upper limb (60%) and leukotrichia was present in 11.67%. Similarly, 88 of 100 patients had vitiligo overexposed areas in a study conducted by Krishna et al.[12]
Vitiligo area severity index score
Concern regarding the disease spreading to the whole body was an important factor for seeking treatment. Vitiligo on the exposed areas caused more problems in social interactions, while those with vitiligo involving covered areas were less concerned about social interaction and functioning, but were quite worried about the social consequences of vitiligo spreading to the exposed areas.[3]
The mean VASI score in this study was 4.11 ± 0.38. At 1-month follow-up, the mean VASI score was reduced to 3.59 ± 0.58. Hence, the improvement after 1 month of treatment was 0.58 ± 0.043. Similarly, in a study conducted by Ghorbanibirgani et al., the mean VASI score was 4.98 ± 0.81 at baseline.[17]
There was no statistically significant difference found between gender, age group, family history of vitiligo, and VASI score. In contrast, there was a statistically significant difference found between genders, age, family history of vitiligo, and VASI score in a study conducted by Patvekar et al.[11]
VASI score was the same for both genders (4.10 ± 0.4) at baseline. However, after 1 month, improvement was slightly higher in females than males. The highest and lowest mean VASI score was found in the age group of >60 years (4.33 ± 0.5) and 16–30 years (4.01 ± 0.37), respectively. After 1-month of follow-up, the highest improvement was found in the age group of >60 years (0.56 ± 0.05). VASI score was higher in patients with negative family history (3.82 ± 0.39). At 1-month follow-up reduction in VASI was higher in patients with negative family history (4.11 ± 0.39), with the improvement of 3.59 ± 0.58.
In the present study, a statistically significant difference was found only with dermatological sites [Graph 2]. VASI score was highest on the face (4.75 ± 0.39), followed by genitals (4.45 ± 0.56) and trunk (4.18 ± 0.41) as compared to other sites at baseline. At 1-month follow-up, the reduction in VASI score was highest on the face (3.83 ± 0.38) with the improvement of 0.69 ± 0.043 (P < 0.059).
Dermatology life quality index score
In the present study, the mean DLQI score reported in this study was 11.73 ± 0.80 signifying that vitiligo has a large impact on the QOL (46.67% of patients). In the study by Sangma et al., 95% of patients had elevated DLQI against 30% in the control group. The mean DLQI among cases was elevated with a score of 9.08 ± 4.46 as compared to a very low score of 1.04 ± 1.12 in the control group, which is of high statistical significance (P < 0.001).[13]
There was no statistically significant difference in the DLQI score of males (12.04 ± 6.08) and females (11.73 ± 6.22) in our study. The QOL of both genders is evenly impacted by vitiligo. Correspondingly, in a study conducted by Krishna et al., there was a lack of correlation between gender and impaired QOL in the population.[12]
The QOL was greatly impacted in patients between 16 and 30 years of age in this study. Similarly, A study conducted by Patvekar et al. showed younger patients had more impaired QOL.[11]
In our study, unmarried patients had highly impaired QoL as compared to married. An interesting result found in this study was that among all the unmarried patients, 21–30 years age group had greatly impaired QoL. A study conducted by Dolatshahi et al. noticed a significant difference in DLQI and marital status.[18]
Considering the occupation, teachers (11.82 ± 0.83), housewives (11.84 ± 0.84), and students (11.75 ± 0.81) have reported great impairment in QoL. Students with vitiligo face problems in coping with school or college life, hindering participation in social programs, choosing an ideal course or career prospect, having multiple visits to doctors, and being subjected to teasing.[13]
The impairment in QoL was larger in patients having vitiligo for 5–10 years than in those with <5 years in our study, similar results were found in a study conducted by Ghajarzadeh et al.[19]
In this study, there was a significant difference found between QoL and dermatological sites involved in vitiligo. Large impairment in QoL was seen in patients having depigmentation on exposed parts.[11],[12],[14]
Vitiligo impact score-22 questionnaire
Vitiligo features a significant psychological impact which must be evaluated separately from the extent of depigmentation. Vitiligo Impact Scale-22 (VIS-22) was developed to measure vitiligo-specific QOL.[20] Diverse responses from individuals, families, and society cause a greater psychological burden.[9]
The mean VIS-22 score in this study was 37.32 ± 1.53 which was considered moderate psychological impact (58.3%). This result was comparable to a study by Patvekar et al. where the mean VIS 22 score was 32.57 ± 18.44.[11]
In our study, a significant difference in the mean VIS-22 score among both genders was observed with males having slightly more psychological impact than females. Similar findings obtained with a study conducted by Patvekar et al.[11]
A study conducted by Patvekar et al. showed that there was a negative correlation between VIS-22 and age.[11] In contrast, there was a significant difference found between VIS-22 and age in this study. The severe psychological impact was seen in patients between 16 and 30 years (37.1 ± 1.57).
This study reiterates that unmarried patients have a severe psychological impact as compared to married ones. Among all unmarried patients, the 21–30 years group had more psychological impact (37.95 ± 1.63) due to difficulty in getting married. They at times do not reveal their condition to their partners due to embarrassment or fear of rejection. Furthermore, married patients with the age of 21–30 had a high psychological impact which was confirmed by a questionnaire and interview-based study, where two-thirds of patients felt worried about the spread of disease, inheritance in children and whether new cures would be found.[21]
Considering the occupation, a greater psychological impact was found among teachers (37.28 ± 1.6) and students (37.28 ± 1.6). This was consistent with a study by Pahwa et al. who demonstrated a higher psychosocial impact of vitiligo on education, marriage, and employment.[22]
In our study, we found a higher psychological impact in patients who had vitiligo for 5–10 years. In contrast, a study conducted by Krishna et al. found a negative correlation of duration with VIS-22.[12]
The psychological impact was higher in individuals having vitiligo on the face, upper limbs, and lower limbs. Similar results were found in this study a study conducted by Krishna et al. showed that patients with vitiligo on exposed to areas.[12]
In this study, there was a significant correlation between VIS-22 and age, marital status, occupation, and duration. Similarly, in a study conducted by Gaafar, there was a significant correlation between VIS-22 and age, marital status, duration of disease, occupation, and presence of vitiligo on the face and exposed areas.[23]
Family dermatology life quality index score
There are very few studies which assessed the QOL of family members.
There was no significant difference in the FDLQI score of males (10.87 ± 0.76) and females (10.58 ± 0.71).
There was great impairment of QoL in family members of cases between 16 and 30 years, which consists of adolescents and adults whose family members had more concern for their appearance. This was more among unmarried patients.
In the present study, we found higher impairment in family QOL in patients with vitiligo on their exposed areas. A study conducted by Gahalaut et al. obtained similar findings in their study.[24]
In our study, the QOL of family members was more impaired in patients with vitiligo during <5 years. Similar findings were found in a study conducted by Bin Saif et al., lower duration of disease had higher impairment in the QOL of family numbers of affected individuals.[25]
Considering the family-related factors, there was no statistical significance between both genders and FDLQI. In regard to the relationship with patients, parents (10.68 ± 0.73) and spouses were affected more than other family members (10.23 ± 0.73) in this study. A study conducted by Bin Saif et al. found that female family members had higher FDLQI scores compared to males and spouses and children were affected more than other family members. Other than these factors emotional stress, the burden of care, and physical well-being had an effect on family QOL.[25]
Association of vitiligo area severity index with dermatology life quality index score and vitiligo impact score-22 score
A statistically significant association was found between VASI, DLQI score, and VIS-22 questionnaire.
The maximum number of patients (n = 26, 43.3%) had VASI scores between 201 and 400, of which 16 (more than half) had large impairment in QOL (DLQI score: 11–20) and 13 (half of all) ranging between 16 and 25 years had VIS-22 score between 44 and 66.
Only one patient had VASI between 1401 and 1600 with QOL between 11 and 20 and VIS-22 between 23 and 44. Older age and the chronic nature of the disease led to a decrease in impairment in QOL and lower psychological impact.
Association of dermatology life quality index with family dermatology life quality index
In our study, DLQI and FDLQI had a statistically significant association.
The family members of most patients (n = 21, 35%) with large impairment in QOL (DLQI score-11–20) also showed a large impairment in FDLQI score (11–20).
Limitations
This study was limited to a tertiary care hospital in the Western region of India and thus the findings cannot be generalized.
Limited period, small sample size, and inability to get patients investigated for biochemical and/or serological abnormalities formed the limitations of this study.
ConclusionVitiligo causes impairment in QoL and has a large psychological impact.
In this study, 60 patients were enrolled. The impairment in QOL was mainly seen in the age group of 16–30 years, with a duration of disease between 2 and 5 years and depigmented patches on the exposed areas. Higher psychological impact and more impairment in QOL of family members were in disease duration of 1–2 years and age group of 16–30 years.
Treatment strategies in vitiligo should take into consideration QOL which should also be an outcome measure while treating such patients. Many patients and their families may require psychiatric consults and counseling which enhances their QoL.
Acknowledgment
The authors are sincerely thankful to all the members of the Department of Skin and VD, SBKS MIRC, Sumandeep Vidyapeeth Deemed to be University for their support.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References
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