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March 2022

VIPOC
In Vitiligo, Vitiligo stories

Disability is not an Inability

These are the 10 Fun Facts about Julie Nasuju You didn’t know as below.

In The research done by Maya Clinic and Oxford University Medical science, vitiligo is a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. In our article we shall look at a living testimony of a vitiligo victim and what she is today;

Julie Nasuju is a Kenyan Model at Model management.com, MC, Deejay, Actress, Motivational speaker who lives with a skin pigment (vitiligo) since her childhood.

Fun Facts 1. Good vibes ambassador.

2. I love my skin.

3. Mother of four.

4. Loves cooking and eating.

5. Sometimes I’m mistaken as either Nazizi or Fena look alike.

6. Once featured as the main model on a Sauti Sol music video.

7. Was a dancer back in the days.

8. Was once a lead singer in a worship team.

9. Was a handball goalkeeper.

10. My life journey is inspiring.

She is also a member of Royal Patches, a platform of the Vitiligo Society of Kenya that organizes meetings and empowerment sessions for vitiligo living Kenyans this is because, In June, a friend of theirs, a 20-year-old girl suffering from vitiligo, committed suicide. That proved it is necessary to reach other vitiligans, support and encourage them.

I kindly welcome your thoughts, comment, likes and shares about the above content on the beautiful living Kenyan Model With vitiligo.

 

You can follow her Instagram page @royal_patches

Source

 

VIPOC
In Vitiligo, Vitiligo stories

The fight against stigmatization

By Sista Akos

Enam Honya Heikeens a pretty Ghanaian nurse who had her nice-looking black skin completely being dominated by a skin illness known as vitiligo which she has to live with since age 7.

In an up-close with Enam, now the director for Vitiligo Ghana Foundation mentioned that she assists people to fight against the stigma people with vitiligo have to endure because of their situation and indicates that it has never been easy.

In the entire life of Enam, she has had to endure the strange looks people give her and to some extent refrain from any form of contact with her as if she had a communicable disease.

“People are always asking questions about my skin. They always stare at me and there have been instances when community folks don’t want to board the same bus with you or have their kids befriend you because they think the condition is contagious” she added.

Enam had her basic education at Keta State School. She continued to Keta Business Senior High School and later went to Keta Nursing and Midwifery training college all in the Volta region. As stated by Enam, her interest is to keep encouraging people with vitiligo and develop plans to put a limit to the stigma attached to the condition.

You can follow Enam on Instagram @vitiligo_ghana

Source

 

VIPOC
In Quality of Life with Vitiligo, Vitiligo, Vitiligo research, Vitiligo Scientific Study, vitiligo treatment

Anxiety and depression in pediatric patients with vitiligo and alopecia areata and their parents: A cross-sectional controlled study Part 1

Department of Dermatology, University of

Health Sciences, Sultan Abdulhamid Han

Training and Research Hospital, Istanbul,

Turkey

Correspondence

Sevil Savaş Erdoğan, Department of

Dermatology, Sultan Abdulhamid Han Training and Research Hospital, Tıbbiye Street., 34668, Usküdar, Istanbul, Turkey. Email: doktorsevilsavas@gmail.com

2232  |   © 2020 Wiley Periodicals LLC                                                       wileyonlinelibrary.com/journal/jocd       J Cosmet Dermatol. 2021;20:2232–2239.

 

1       | INTRODUCTION

Anxiety and depressive disorders are the most common psychopathologies in children and adolescents.1 Alopecia areata (AA) is a common hair disorder characterized by a sudden-onset non-cicatricial but has a great negative effect on cosmetic appearance. Several studies have estimated the prevalence of AA worldwide to be 1%-2%, and in the majority, the first patch presents before the age of 20 years.2 Vitiligo is characterized by the partial or complete absence of melanocytes that cause the development of white macules or patches in various parts of the body.3,4 The worldwide prevalence of vitiligo is estimated to be 0.5%-2%, and approximately 50% of patients experience vitiligo before the age of 20 years.5,6 Since their visibility, chronic and disfiguring nature, and lack of curative therapy, AA and vitiligo may have high psychosocial effects on patients. AA and vitiligo are associated with various psychiatric comorbidities. In different studies, high anxiety and depressive disorder rates have been reported in children and adolescents with AA.7-11 Studies have shown that vitiligo patients suffer more from depression and anxiety.12-14 However, there are only a limited number of studies investigating the relationship between vitiligo and psychiatric state in children and adolescents.15-17

Skin diseases have a negative effect on family life,18-20 and the care of a child with AA or vitiligo may be associated with higher anxiety and depression in their parents than that of healthy children. Unlike other studies, in the current work, children and adolescents with AA and vitiligo and their parents were compared with each other and also with the healthy control group. Therefore, we aimed to identify psychiatric findings in children and adolescent groups with AA and vitiligo and to evaluate the levels of anxiety and depression in their parents. We also aimed to investigate the quality of life (QoL) of patients, and the impact of the disease on their parents.

2       | MATERIAL AND METHOD

2.1      | Study design and subjects

This is a prospective cross-sectional study conducted in our dermatology outpatient clinic between October 2018 and December 2019. The study was approved by the institutional ethical committee and carried out in accordance with the principles of the Declaration of Helsinki. Patients, controls, and their parents, who agreed to participate in the study, provided informed consent.

The study included children and adolescents aged seven to 17 years and their parents. Of the patients, 31 had AA and 29 had vitiligo. In addition, 30 age- and gender-matched healthy controls without any dermatological disease and their parents with a similar education level to that of the patients’ parents were included as a reference group. The following exclusion criteria were used for both the patient and control groups: systemic treatment (systemic steroid, cyclosporin and/or neuropsychiatric drugs) within the last three months prior to the study and any other chronic disease.

2.2      | Demographic variables and clinical severity

Demographic data (patient age and gender, and parental age and education level) and medical information (disease duration, disease severity, and presence of stressful life events within the past year from the onset of disease) were noted in separate forms for the patients. In addition, through a clinical examination, the Severity of Alopecia Tool (SALT) score21 was calculated for the patients with AA, and the Vitiligo Area Severity Index (VASI)22 for those with vitiligo.

The questionnaires explained below were administered in a single interview. The patients and controls completed the Revised Child Anxiety and Depression Scales-Child version (RCADS-C), and their parents completed the parent version (RCADS-P) to support the results of the child version. The parents also completed the Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI). Lastly, the Children’s Dermatology Life Quality Index (CDLQI) scale was completed by the patients, and the Dermatological Family Impact Scale (DeFIS) by their parents.

2.3      | Scales on psychological parameters and QoL

CDLQI is a four-point Likert scale that evaluates the state of the patients and can be used in children aged four to 17 years. Higher scores indicate a greater level of deterioration in QoL. In this study, we used the Turkish version of this scale, for which validity and reliability studies have been previously conducted.23

RCADS-C and RCADS-P are self-report questionnaires, each containing 47 items designed to assess DSM-IV depression and anxiety disorders in children and adolescents. Response options are based on four-point Likert scales. Both versions have six subscales [separation anxiety disorder (SAD), social phobia (SP), obsessive-compulsive disorder (OCD), panic disorder (PD), generalized anxiety disorder (GAD), and major depressive disorder (MDD)] and provide a total anxiety score (sum of the score in five anxiety scales) and a total internalizing score (sum of the six scores in subscales).24 In this study, we used the Turkish versions of these questionnaires. The validity and reliability studies of the Turkish versions have been previously conducted.25,26

DeFIS is a 15-item, five-choice response scale to investigate how the family QoL of patients with chronic dermatosis has been affected within the last month and produces a score of 0-4. Higher scores indicate greater impairment in QoL. The scale was developed for the Turkish society by Turan et al, and the validity and reliability studies have been undertaken by the same authors.27

BAI is a 21-item self-report scale that was used to measure parents’ anxiety levels in this study. The items include symptoms of anxiety and higher total scores indicating greater anxiety levels. BAI was previously adapted to the Turkish society, and the Turkish version of the scale was in the current study.28

BDI is a 21-item self-report scale that was used to measure the level of depression in parents. There are four statements for each symptom, and a higher total score indicates a higher level of depression. The validity and reliability studies of the Turkish adaptation of the 1979 version of BDI have been undertaken.29,30

2.4      | Statistical analysis

As the statistical method, descriptive analyses (frequency distributions, percentage, mean, and standard deviation) were used. For the analysis of continuous data, conformance to normal distribution was checked using the Kolmogorov-Smirnov test. For the data that were normally distributed, the comparison of more than two groups was undertaken with ANOVA and the post hoc Bonferroni test and the comparison of two groups using the t-test.

In the absence of normal distribution, Kruskal-Wallis and MannWhitney U tests were performed, the chi-square test was used for discrete data, and Fisher’s exact test was conducted depending on the data compatibility. Relationships were investigated by the

TABLE 1 Characteristics of patients and controls

Spearman rho correlation coefficient. The results were evaluated at the 95% confidence interval and P < .05 significance level.

3       | RESULTS

3.1                | Demographic and clinical characteristics of the study groups

Thirty-one patients with AA, 29 patients with vitiligo, and 30 age- and gender-matched controls were included in the study. The mean (± standard deviation) ages of the in the AA, vitiligo, and control groups were 12.5 ± 3.6, 13 ± 3, and 12.6 ± 3.1 years, respectively. There was no statistically significant difference between the patient and control groups in terms of age, gender, number of siblings, parental education level, and parental marital status (Table 1). All patients with AA had the patchy type, and their mean SALT score was 6.3 ± 13.1. In the vitiligo group, the type of disease was vulgaris in 51.7% (n = 15), focal in 44.8% (n = 13), and segmental in 3.4% (n = 1). The mean VASI score of the vitiligo group was 3.6 ± 7.4. The mean disease duration was 6.5 ± 15.5 (range, 1-84) months in the AA group and 31.4 ± 35.5 (range, 2-132) months in the vitiligo group.

The difference between the AA, vitiligo, and control groups in terms of the presence of stressful life events was statistically

 

Groups

Alopecia areata

 Vitiligo Controls P-value
Age, mean ± SD 12.54 ± 3.56 13 ± 3.03 12.6 ± 3.06 .85
Sex Female, n (%) 14 (45.16) 13(44.82) 14(46.66) .98
Male, n (%) 17 (54.83) 16(55.17) 16(53.33)
Mother’s educational level Illiterate, n (%) 1 (3.2) 3(10.3) 0 .56
Primary school, n (%) 12 (38.7) 9(31) 12(40)
Middle School, n (%) 5 (16.1) 5(17.2) 8(26.7)
High school, n (%) 9 (29) 6(20.7) 7(23.3)
University, n (%) 4 (12.9) 6(20.7) 3(10)
Father’s educational level Illiterate, n (%) 11 (35.5) 6(20.7) 13(43.3) .6
Primary school, n (%) 5 (16.1) 6(20.7) 4(13.3)
Middle School, n (%) 8 (25.8) 11(37.9) 9(30)
High school, n (%) 7 (22.6) 5(17.2) 4(13.3)
University, n (%) 0 1(3.4) 0

Parental marital status                                         Married, n (%)                                 27 (87.1)                                   25(86.2)                       30(100)                                                                    .11

Separated, n (%)                            4 (12.9)                                        4(13.8)                                                                                                               0

Number of siblings 1, n (%) 4 (12.9) 3(10.3) 4(13.3) .56
2, n (%) 12 (38.7) 17(58.6) 18(60)
3, n (%) 10 (32.3) 7(24.1) 6(20)
4, n (%) 3 (9.7) 2(6.9) 2(6.1)
5, n (%) 2 (6.5) 0 0

TABLE 2 Comparison of groups’ psychological test scores and presence of stressful life event

Groups P-value
                                             Alopecia areata                       Vitiligo                                          Controls AA-Vi                         AA-C                         Vi-C

Stressful life event, n (%)                        19 (61.3)                                      25 (86.2)                                      9 (30)                                                                               .041                                               .014                                         <.0001

RCADS-Child, mean ± SD

Separation Anxiety

 55.61 ± 12.94 50.21 ± 9.6 48.83 ± 9.9 .116 .026 .291
Generalized Anxiety 48.61 ± 11.37 45.14 ± 9.09 42.5 ± 7.41 .195 .021 .261
Panic 49.65 ± 12.3 47.31 ± 10.9 44.67 ± 8.17 .454 .177 .470
Social Phobia 46.19 ± 12.48 43.66 ± 8.72 39.93 ± 8.34 .625 .050 .069
Obsessive-Compulsive 48 ± 12.58 48.03 ± 11.56 46.93 ± 8.89 .935 .874 .952
Depression 49.68 ± 12.21 47.38 ± 14.3 41.07 ± 7.55 .314 .006 .162
Total Anxiety 49.03 ± 12.96 45.69 ± 10.5 42.43 ± 7.88 .287 .057 .295
Total 49.13 ± 12.9 45.86 ± 11.63 41.47 ± 7.95 .245 .010 .261

RCADS-Parent, mean ± SD

Separation Anxiety 57.55 ± 15.3 54.38 ± 9.8 51.03 ± 8.43 .700 .167 .181
Generalized Anxiety 54.81 ± 9.64 52.9 ± 11.55 51.6 ± 10.8 .415 .133 .660
Panic 55.06 ± 12.64 54.24 ± 11.82 48.57 ± 9.9 .795 .014 .030
Social Phobia 49.26 ± 12.09 49.45 ± 10.91 45.83 ± 8.47 .900 .291 .199
Obsessive-Compulsive 57.39 ± 11.18 55.86 ± 11.17 54.97 ± 11.18 .573 .422 .558
Depression 58.74 ± 14..95 56.24 ± 14.15 47.37 ± 8.23 .529 .001 .014
Total Anxiety 55.06 ± 10.92 53.9 ± 12.39 50.2 ± 10.65 .569 .041 .316
Total 56.32 ± 11.1 54.72 ± 12.24 49.43 ± 10.22 .428 .012 .074
Parents’ BAI, mean ± SD 11.71 ± 8.78 11.45 ± 10.21 8.97 ± 8.71 .667 .169 .235
Parents’ BDI, mean ± SD 10 ± 6.72 9.83 ± 5.79 7.53 ± 5.78 .906 .110 .093

Abbreviations: AA, Alopecia Areata; Vi, Vitiligo; C, Controls; BAI, Beck Anxiety Inventory; BDI, Beck Depression Inventory; RCADS-Child, Revised Child Anxiety and Depression Scales, Child Version; RCADS-Parent, Revised Child Anxiety and Depression Scales, Parent Version.

 

significant (P < .0001). Furthermore, this parameter was statistically significantly higher in the vitiligo group compared to the AA and control groups (P = .014 and P < .0001, respectively) (Table 2).

VIPOC
In impact of vitiligo on children and their parents, Vitiligo, Vitiligo research

Parental Stress and Quality of Life in Chronic Childhood Dermatoses Part 1

by DEBATRI DATTA, MD; RASHMI SARKAR, MD, MNAMS; and INDRASHIS PODDER, MD, DNB

Dr. Datta is a consultant dermatologist at Oliva Skin Clinic, in Kolkata, West Bengal, India. Dr. Sarkar is with the Department of Dermatology, LHMC and associated KSCH and SSK Hospital in New Delhi, India. Dr. Podder is with the Department of Dermatology, College of Medicine and Sagore Dutta Hospital in Kolkata, West Bengal, India.

Vitiligo, urticaria, and acne vulgaris, can 1 J Clin Aesthet Dermatol. 2021;14(9 Suppl 1):S19–S23 Chronic childhood dermatoses, such as atopic dermatitis, psoriasis, ichthyosis, require frequent dermatologic consultations and have a profound impact on a pediatric patient’s quality of life. Demand for social and psychological support increases as these children grow up and integrate into society, and children with severe disease may need around-the-clock care for years. Studies have shown that parents caring for children with chronic disorders often experience negative changes in psychosocial status, which can negatively impact adherence to treatment for the child, resulting in worsening of the condition.1–3

Although research exists for chronic systemic illnesses, such as epilepsy, asthma, cancer, and diabetes, to our knowledge, literature is scarce regarding the eff ect that caring for a child with a chronic dermatosis can have on the parent.2 Here we explore the existing literature to better understand the impact that caring for a child with a chronic dermatosis can have on the parent/caregiver’s mental health (e.g., stress) and quality of life.

MATERIALS AND METHODS

We undertook a comprehensive English literature search across multiple databases including PubMed (MEDLINE database), Scopus, and Cochrane using the keywords (alone and in combination) and MeSH items “chronic childhood dermatoses” OR “atopic dermatitis” OR “vitiligo” OR “psoriasis” OR “acne” OR “urticaria,” AND “parental stress” OR

“caregiver stress” OR “parent quality of life” OR “caregiver quality of life” OR “family quality of life” to obtain relevant articles, priority being given to prospective, randomized, controlled trials and those concerning chronic dermatological disorders and parental or caregiver stress. Additional data were obtained from the reference lists of selected articles.

RESULTS

Overall we obtained three review articles (1 foused on atopic dermatitis) and 20 clinical studies (5: atopic dermatitis, 4: vitiligo, 4: psoriasis, 1: psoriasis and atopic dermatitis, 1: epidermolysis bullosa, 5: chronic childhood dermatoses, 1: alopecia areata). We analyzed these articles and prepared the current manuscript along with a relevant review of literature.

DISCUSSION

Although there have been several studies concerning parental stress in chronic childhood morbidities, such as bronchial asthma, cancer, epilepsy, juvenile rheumatoid arthritis, and sickle cell anaemia,2 data specifi ally on chronic dermatoses are scarce. Among the available relevant literature, the majority of

 

FUNDING: No funding was provided for the preparation of this article.

DISCLOSURES: The authors have no confl icts of interest relevant to the content of this article.

CORRESPONDENCE: Indrashis Podder, MD, DNBD; Email: ipodder88@gmail.com

TABLE 1. Potential causes of increased stress in parents/caregivers of children with chronic skin diseases
IMPORTANT REASONS OF INCREASED PARENTAL STRESS POSSIBLE EXPLANATION
Child’s behaviour • Affected children suffering for a long time may become clingy and needy.

•         Psychiatric disorders such as depression and anxiety may develop.

•         Severe disease may cause more behavioural problems.
Parent-child relationship •         Parents may become stressed by their child’s need for constant attention.

•         Social isolation of the child (possibly into adolescence) may affect the parents.
Psychosocial functioning of parents •         Parents/caregivers can suff er from worry, emotional lability, depression, anxiety, and embarrassment.

•         Parents/caregivers can feel guilt, shame, and anxiety over the consequences faced by children.

•         Parents/caregivers may be overprotective of their children and/or give in to their children’s demands due to emotional exhaustion.
Marital relationships •         Marital discord may arise due to unnecessary self- or partner-blaming for familial diseases.

•         Partners may develop feelings of jealousy over lack of intimate time.7
Sleep disturbance in parents •       Nocturnal caring of children can disturb sleep pattern of caregivers.
Diet and meal preparation •       Adjustments, if any, required for the children’s diet can cause stress.
Environmental factors •       Adjustments in home environment, like changing and washing sheets regularly or cleaning up after the sick child, can cause stress.
Financial burden •         Regular cost of medicines, multiple doctor visits, transport, etc. can eat into the family budget.

•         Time contributed to patient care can aff ect employment of the caregiver.
Sibling problems •       Yet unstudied–attention given to sick children can stress siblings and cause familial discord.

with atopic dermatitis were more anxious and depressed, compared to controls.22 However, educational interventions and behavioural modifi cations have been shown to reduce the severity of disease in the child and help both child and parent/caregiver improve psychologically.23

A study using the Infants’ Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI) to measure the quality of life in families with children with atopic dermatitis noted tiredness and sleep deprivation in parents/caregivers due to the children taking a long time to fall asleep.24 In a study by Sarkar et al,25 researchers reported increased stress and submissive personality traits in mothers of Indian children with atopic dermatitis, which appeared to increase psychological disturbances in their children. In addition to emotional stress, the need for cleanliness to avoid environmental allergens, as well as the imposed fi nancial burden as a result of long-term treatment and care, were reported to further increase stress in parents and caregivers of such children.25

articles we found pertained to childhood atopic dermatitis, followed by psoriasis.1–3 Our analysis of the available data revealed that chronic childhood dermatoses can affect the parental/ caregiver’s quality of life and induce stress for several possible reasons, which are highlighted in

Table 1.4–10

Scales to assess parental/

caregiver stress. A vital problem in assessing parent/caregiver stress is the paucity of scales to document its presence and severity. Such documentation is necessary, not only for academic purposes but also to assess the role of therapy in such individuals. Over the years, several scales and instruments have been designed to measure the impact of dermatological diseases on families and caregivers (Table 2).7,11–20

 Atopic dermatitis. Atopic dermatitis is one of the most studied childhood dermatoses in relation to familial stress. A study of American children with atopic dermatitis reported that parents experienced self-blame and guilt on observing their children suffer.5 As the disease persisted into adolescent years, resultant social isolation of the child often prolonged and aggravated parental stress.5 In a Chinese study,21 mothers spent more time with their children with atopic eczema, compared to other caregivers, and reported more suffering (i.e., negative effects on mental and physical well-being due to difficulty in simultaneously managing childcare responsibilities with other household responsibilities.5 Another study reported that mothers caring for children

Vitiligo. Vitiligo is an acquired depigmenting disease that destroys melanocytes, aff ecting one or multiple regions of the body.26 Childhood vitiligo is common—50 percent of vitiligo patients note onset before 20 years of age, amd 25 percent have onset before the age of 10. There is female preponderance for vitiligo and segmental distribution (i.e., distributed along a dermatome).26 Though vitiligo does not cause physical limitations, the cosmetic disfigurement can result in social discrimination and ostracization of the child, which can negatively impact the psychosocial status of the child, the child’s parent/caregiver, and other members of the child’s family.

Studies in children and adolescents with vitiligo have assessed its impact on patient quality of life, and a greater incidence of childhood depression has been reported.27,28 Interestingly, the decreased quality of life appeared to be dependent on the patient’s apprehensions and psychosocial adjustments, rather than actual clinical severity.29 However, very few studies are available regarding the stress of parents, caregivers, and families in regard to their children with vitiligo.

A study by Amer et al included 50 children with vitiligo and their parents and 50 healthy

 

S20          The Journal of Clinical and Aesthetic Dermatology • September 2021 • Volume 14 • Number 9 • Supplement 1

 

controls.30 The Self-rated Health Measurement Scale (SRHMS) and the Dermatitis Family Impact Questionnaire (DFI) were used to assess the impact of vitiligo on the life of the patients and their families. Investigators reported greater psychological distress and feelings of embarrassment among parents of patients with vitiligo. Parents of children with generalized, progressive disease were more severely aff ected. The mothers were more aff ected than fathers, reporting exhaustion, self-blame, and disappointment regarding disease prognosis.30

A Brazilian study assessing anxiety and depression in caregivers of pediatric dermatology patients noted anxiety and depression in 42 percent and 26 percent of participants, respectively.31 The extent of visible body surface area affected correlated with degree of anxiety in caregivers. An Indian study noted parents of children with vitiligo reported being worried about the children developing low self-esteem and difficulty in arranging marriages for them.32 This parental anxiety was reported to conversely aff ect the children psychologically, in that the children became concerned over their parents distress. Another hospital-based Indian study on immediate caregivers (parents and grandparents) of pediatric patients with vitiligo, using the Family Dermatology Life Quality Index (FDLQI), detected emotional distress in caregivers and impaired quality of life in female patients and those with longer duration of disease. The researchers recommended psychiatric counseling for the patient and family members.33

TABLE 2. Important scales that assess stress and quality of life in parents/caregivers of children with chronic dermatoses
SCALE INFORMATION DISEASE
Family Dermatology Life Quality Index (FDLQI)12 Semi-structured interviews with family members Any skin disease
Dermatitis Family Index (DFI)7 Widespread, available in many languages Atopic dermatitis
The Parents’ Index of Quality of Life in Atopic Dermatitis (PIQoLAD)13 28 items; change of 2–3 points is meaningful Childhood atopic dermatitis
Measure of Quality of Life in Primary Caregivers of Children with Atopic Dermatitis (QPCAD)14 Self-report questionnaire for past 1 week for caregivers Childhood atopic dermatitis
Childhood Atopic Dermatitis Impact Scale (CADIS)15 Eff ect on quality of life of children <6 years and families Childhood atopic dermatitis
Psoriasis Family Index (PFI)16 14 questions to measure impact on quality of life of family members Psoriasis
VIPOC
In Vitiligo, Vitiligo research

Factors affecting quality of life in patients with vitiligo Part 1

Correspondence

Gwang Seong Choi.

E-mail: garden@inha.ac.kr

Accepted for publication

4 April 2017

Funding sources

This study was supported by the Vitiligo Research Grant of the Korean Dermatological Association.

Conflicts of interest

None declared.

*Plain language summary available online

DOI 10.1111/bjd.15560

 Background Little is known about factors affecting the quality of life (QoL) of patients with vitiligo, and previous studies have shown conflicting results. Objectives To explore the QoL of patients with vitiligo and to identify factors affecting QoL.

Methods A nationwide questionnaire-based study was conducted with 1123 patients with vitiligo recruited from 21 hospitals in Korea from July 2015 to June 2016. Data were collected using a structured questionnaire for demographic information and the Skindex-29 instrument. Mild or severely impaired QoL in patients with vitiligo was assessed according to each domain (symptoms, functioning and emotions) of Skindex-29. Multivariate logistic regression analyses were performed to determine the factors associated with QoL.

Results Of the enrolled participants, 609 were male and 514 female, with a mean age of 498 years (range 20–84). The median duration of disease was 30 years (range 0–60). Using multivariate logistic regression modelling, the involvement of visible body parts and a larger affected body surface area were consistently associated with QoL impairment in all three domains of Skindex-29. Additionally, the QoL of patients aged 20–59 years, who potentially had a more active social life than older patients, was associated with functional impairment. Furthermore, a higher educational background was associated with emotional impairment.

238              British Journal of Dermatology (2018) 178, pp238–244

Conclusions A multitude of factors significantly influence the QoL of patients with vitiligo. A better appreciation of these factors would help the management of these patients.

What’s already known about this topic?

  • Quality of life is highly impaired in patients with vitiligo.

What does this study add?

  • The involvement of visible body parts and a larger affect6ed body surface area were consistently associated with impaired symptoms, functioning and emotions.
  • Vitiligo with nonvisible lesions also considerably compromises quality of life; vitiligo should not be regarded as a cosmetic problem.
  • Patients aged 20–59 years experienced significant functional impairment, and those with a higher educational background had more impairment in their emotions.

 

Vitiligo is a chronic depigmentation disorder characterized by well-demarcated white macules and patches, reflecting selective melanocyte destruction. The condition affects 05–2% of the population and remains a major challenge in dermatology.1 Although vitiligo is generally asymptomatic, it profoundly impacts quality of life (QoL).2 Many patients with vitiligo experience stigmatization, low self-esteem and social isolation; even normal daily living may be compromised by the unusual appearance of patients.3 Nevertheless, vitiligo is often regarded as a cosmetic issue, and impairment of QoL tends to be underestimated.4

Major effort should be made to induce repigmentation in patients with vitiligo; however, treatment is not always successful.5,6 Furthermore, the clinical course is unpredictable, and patients frequently encounter recurrence and spread throughout their lifespan.7 Therefore, it is also important to manage the psychosocial impact of the disease, and clinicians should understand the factors associated with QoL impairment when treating patients with vitiligo.

Although a number of studies have already shown that QoL is highly impaired in patients with vitiligo, the factors influencing QoL have rarely been investigated in large populations. We conducted a nationwide questionnaire-based survey of QoL in patients with vitiligo. The factors associated with QoL impairment were examined from the viewpoints of symptoms, functioning and emotions.

Patients and methods

Participants and settings

A nationwide questionnaire-based study was conducted in 21 hospitals and clinics in Korea from July 2015 to June 2016. All patients aged ≥ 20 years diagnosed with vitiligo by dermatologists, and who provided written informed consent prior to the survey were enrolled. We restricted the participants to adult patients, because different questionnaires should be applied to children and adults. We explored demographic characteristics and vitiligo phenotypes and determined Skindex-29 scores. All patients first completed the questionnaires in paper-and-pencil format, and dermatologists then confirmed the clinical profiles after interviewing and examining the patients. The study protocol was designed in accordance with the Declaration of Helsinki and was approved by the institutional review board of each hospital.

Demographic characteristics

Demographic characteristics recorded included age, sex, marital status (single or married) and educational background (elementary school graduate, middle school graduate, high school graduate or college graduate).

Vitiligo phenotypes

The vitiligo phenotypes included subtype (segmental or nonsegmental), disease duration (< 1, 1–4, 5–9 or ≥ 10 years), affected body surface area (BSA; < 05, 05–09, 1–4, 5–9, 10–19 or ≥ 20%), involvement of visible body parts (yes or no) and the particular body parts involved (face and neck, scalp, upper extremities, lower extremities, trunk and genital area).

The Skindex-29 questionnaire

QoL was assessed using the Korean version of Skindex-29. This instrument is employed extensively to measure the effects of skin disease on a patient’s life;8,9 the Korean version was cross-culturally adapted by Ahn et al.10 The semantic equivalence of all back-translated items has been confirmed,10 and the Korean version has been validated by several previous studies.11–13 The questionnaire contains 29 items exploring the influence of skin disease on daily life using a five-point scale: 0 (never), 1 (rarely), 2 (sometimes), 3 (often) and 4 (all the time). The responses were transformed into linear scores varying from 0 (no effect) to 100 (effect always experienced). Each item belongs to one of three domains (symptoms, functioning and emotions); the scores of the three domains were calculated as the mean score of the items included in each domain.

The major items affecting patients with vitiligo

The proportions of patients affected by each item (sometimes, often and all the time) were calculated. The items of most concern were identified based on the answers.

Quality-of-life impairment

The outcomes of the study were mild or severe impairment of QoL, as determined by each domain (symptoms, functioning and emotions) of Skindex-29. Mild and severe QoL impairments were defined using the cut-off scores suggested by Prinsen et al.:14,15 ≥ 39 (mild) and ≥ 52 (severe) for symptoms, ≥ 21 (mild) and ≥ 37 (severe) for functioning, and ≥ 24 (mild) and ≥ 39 (severe) for emotions.

Statistical analyses

Absolute and percentage frequencies were determined for categorical variables, and position (mean and median) and scattering (SD, range) were described for continuous variables. Univariate and multivariate logistic regression analyses were sequentially performed to identify the factors independently associated with QoL impairment in each domain of Skindex29. All analyses were performed using R 3.3.1 (R Foundation for Statistical Computing, Vienna, Austria).

 

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