Family vitiligo impact scale: A scale to measure the quality-of-life of family members of patients with vitiligo.

BACKGROUND: Vitiligo places a significant psycho-social burden on caregivers and family members. AIMS: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. METHODS: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. RESULTS: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach's alpha coefficient of 0.92 (0.70-0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. LIMITATIONS: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. CONCLUSION: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.

Psychosocial burden of lichen planus pigmentosus is similar to vitiligo, but greater than melasma: A cross-sectional study from a tertiary-care center in north India.

BACKGROUND: Lichen planus pigmentosus can have a negative impact on the quality of life; however, this has not been studied in detail. OBJECTIVES: To study the quality of life in patients with lichen planus pigmentosus and compare it with patients with vitiligo and melasma. METHODS: This was a cross-sectional study conducted in a tertiary-care center in north India from January 2018 to May 2019. Patients ≥ 18 years of age with lichen planus pigmentosus (n = 125), vitiligo (n = 113) and melasma (n = 121) completed the Dermatology Life Quality Index (DLQI) questionnaire and answered a global question on the effect of disease on their lives. In addition, patients with vitiligo completed the Vitiligo Impact Scale (VIS)-22 questionnaire, while those with lichen planus pigmentosus and melasma filled a modified version of VIS-22. RESULTS: The mean DLQI scores in patients with lichen planus pigmentosus, vitiligo and melasma were 10.9 ± 5.95, 9.73 ± 6.51 and 8.39 ± 5.92, respectively, the difference being statistically significant only between lichen planus pigmentosus and melasma (P < 0.001). The corresponding mean modified VIS-22/VIS-22 scores were 26.82 ± 11.89, 25.82 ± 14.03 and 18.87 ± 11.84, respectively. This difference was statistically significant between lichen planus pigmentosus and melasma, and between vitiligo and melasma (P < 0.001 for both). As compared to vitiligo, patients with lichen planus pigmentosus had a significantly greater impact on "symptoms and feelings" domain (P < 0.001) on DLQI, and on "social interactions" (P = 0.02) and "depression" (P = 0.04) domains on VIS-22. As compared to melasma, patients with lichen planus pigmentosus had significantly higher scores for "symptoms and feelings," "daily activities," "leisure" and "work and school" domains of DLQI, and all domains of VIS-22. Female gender was more associated with impairment in quality of life in patients with lichen planus pigmentosus, while lower education, marriage, younger age and increasing disease duration showed a directional trend. LIMITATIONS: Use of DLQI and modified version of VIS-22 scales in the absence of a pigmentary disease-specific quality-of-life instrument. CONCLUSION: Patients with lichen planus pigmentosus have a significantly impaired quality of life. The psychosocial burden of lichen planus pigmentosus is quantitatively similar to that of vitiligo, but significantly greater than melasma.

The psychosocial impact of vitiligo in Indian patients.

BACKGROUND: Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture. AIMS: This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life. METHODS: Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns. RESULTS: Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden. CONCLUSION: Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.

Vitiligo impact scale: an instrument to assess the psychosocial burden of vitiligo.

BACKGROUND: Vitiligo is a disease that significantly impairs quality of life. Previous studies have shown that vitiligo has an impact that may not correlate with the size and extent of depigmentation, indicating a need for an independent measure of the psychosocial burden. AIMS: To develop a rating scale to assess the psychosocial impact of vitiligo. METHODS: The study was undertaken in three broad phases: item generation, pre- and pilot testing, and test administration. Items were generated largely from a qualitative study using semi-structured interviews of patients. Face and content validity were assessed through pre- and pilot testing in 80 patients and the final version was administered to 100 patients who also received the Dermatology Life Quality Index (DLQI) and the Skindex-16. Each patient also underwent a physician global assessment (PGA) of the impact of vitiligo. Test-retest reliability was assessed in 20 patients. RESULTS: Of 72 items initially generated for the scale, 27 were retained in the final version. Subjects were able to comprehend the items and took about 5-7 min to complete the instrument. The scale was internally consistent (Cronbach's α = 0.85). Scores on the scale correlated moderately well with the DLQI and the Skindex (Spearman rank correlation: 0.51 and 0.65, respectively). The scale was able to discriminate between patients having mild and those having moderate and severe impact as assessed by PGA. The test-retest reliability coefficient (Spearman rank correlation) was 0.80. CONCLUSION: The Vitiligo Impact Scale appears to be a valid measure of the psychosocial impact of vitiligo and this instrument may be useful both in the clinic and in clinical trials.

Quality of life in vitiligo patients.

Quality of life is defined by the World Health Organization as "individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns." Often overlooked in the past, it is nowadays considered, in a more holistic view of medicine, a decisive factor to understand the impact of diseases and improve the quality of medical care. Such evaluation is particularly relevant for dermatological diseases, because visibility of the lesions can significantly affect self-esteem and social relationships. Vitiligo represents an emblematic case: often disfiguring and located in visible areas, confused in the past (and, in many world regions, even in the present) with leprosy, often perceived by physicians as a harmless, purely cosmetic problem, it significantly decreases the quality of life of affected persons. After a brief overview on definition, usefulness and methods for the assessment of quality of life, the authors examine the peculiarities of its relationship with skin diseases, particularly vitiligo. The state of the art of knowledge and research in this field is presented, together with data showing usefulness and positive results of a multidisciplinary approach, which adequately keeps into account perceived quality of life, on patient's satisfaction, adherence to treatment protocols and, ultimately, better outcome of treatments. In this context, an important role can be played by support communities, groups of patients and dedicated associations and societies, connected through modern communication networks like the Internet.

A measurement of the stigma among vitiligo and psoriasis patients in India.

BACKGROUND AND AIM: The aim is to measure and to compare the level of social participation experienced by vitiligo and psoriasis patients in their domestic and social life in an Indian context. METHODS: A cross-sectional comparative study with a sample of 150 cases each of psoriasis and vitiligo, a total of 300 subjects. A detailed clinical assessment of these two conditions, including the extent of lesions on the affected body parts, socioeconomic status and participation levels in social and domestic lives, was done. RESULTS: The result showed that, 17.3% of vitiligo patients participated minimally in domestic and social life, whereas 28% of psoriasis patients had this problem (P=0.027). Extreme participation restriction was observed only among psoriasis patients (2.7%). Psoriasis patients also faced significantly more restrictions in a number of day-to-day life situations such as, less confidence in learning and applying knowledge, difficulties in meaningfully participating in major life areas like, work, education and employment, and also in community, social and civic life (all three domains P<0.0001), to vitiligo patients. CONCLUSION: Both psoriasis and vitiligo patients suffered moderate to severe restriction while participating in their domestic and social life. Of these two groups, psoriasis patients faced significantly more restrictions in a number of day-to-day life situations. The Indian population of this study was predominantly dark-skinned and hypo-pigmentation as seen in vitiligo is much more noticeable than psoriatic red patches. However, the results showed that the component of hypo or hyperpigmentation of the skin is not the only factor leading to participation restrictions.

Study on differences and similarities in the concept and origin of leprosy stigma in relation to other health-related stigma.

While the experienced or enacted stigma may be the same for all health related stigma, in terms of isolation, discrimination and social participation restrictions of the affected persons; the concept and origin of stigma varies from one disease to another. An understanding of the cause of stigma is, therefore, essential to formulate effective strategies for its reduction/elimination. This is especially imperative in the case of leprosy where the basis of stigma is significantly different from other health related stigma. In this paper, a comparison is made between the concept and origin of leprosy stigma with that of other stigmatised diseases.

Life quality assessment among patients with vitiligo: comparison of married and single patients in Iran.

BACKGROUND AND AIMS: Vitiligo is known to affect the quality of social and personal life in some countries. This study aims to assess the quality of life (QOL) in vitiligo sufferers among the Iranian population and to evaluate its relation with different variables. METHODS: One hundred vitiligo patients answered a questionnaire based on the Dermatology Life Quality Index (DLQI). RESULTS: The mean DLQI score was 8.16. There were statistically significant relationships between DLQI scores and marital status, skin phototype, and disease extension independently. CONCLUSIONS: This study shows that vitiligo has a major impact on the QOL of patients in Iran. Hence dermatologists should pay attention to the psychological effects of this cosmetic disease and try to decrease its extension and disfiguring effects by various treatments.

Stigma experience in skin disorders: an Indian perspective.

Dermatologic disorders generally have a major impact on patients' daily activities, psychologic and emotional state, and social relationships. The intensity of impact of skin disease on an individual person is extremely variable, however, and depends on natural history of the disorder; the patient's demographic characteristics, personality, character, and value; the patient's life situation; and the attitudes of society. Social stigma toward dermatologic disorders in the Indian society is quite widespread, especially toward leprosy. Dermatologists are expected to consider quality of life issues along with social aspects, nature of disorder, efficacy, and tolerability of various therapeutic options to optimize relief and comfort to their patient.

Psychiatric morbidity in vitiligo: prevalence and correlates in India.

BACKGROUND: Vitiligo, a common pigmentary disorder, is recognized to be associated with a high psychiatric morbidity, yet compared to other dermatological disorders like leprosy, psoriasis, etc., it has not been subjected to detailed evaluation of its psychological consequences. The data from the developing countries on this aspect in particular is meager. METHODS: One hundred and thirteen cases with vitiligo were evaluated along with 55 healthy controls comparable for sociodemographic profile and matched on attitude to appearance scale. Clinical details, impact of illness, associated dysfunction and psychological morbidity were additionally assessed. RESULTS: Twenty-eight patients with vitiligo were found to have psychiatric morbidity, a clinic prevalence rate of 25% (95% confidence interval 20.3-29.3%). The majority of the cases had a diagnosis of adjustment disorder. Psychiatric morbidity was significantly correlated with dysfunction arising out of illness. CONCLUSIONS: Vitiligo is associated with high psychiatric morbidity. There is a need to develop cross-cultural database on psychosocial aspects and psychiatric morbidity associated with vitiligo.

Psychiatry morbidity in vitiligo: prevalence and correlates in India

BACKGROUND: Vitiligo, a common pigmentary disorder, is recognized to be associated with a high psychiatric morbidity, yet compared to other dermatological disorders like leprosy, psoriasis, etc., it has not been subjected to detailed evaluation of its psychological consequences. The data from the developing countries on this aspect in particular is meager. METHODS: One hundred and thirteen cases with vitiligo were evaluated along with 55 healthy controls comparable for sociodemographic profile and matched on attitude to appearance scale. Clinical details, impact of illness, associated dysfunction and psychological morbidity were additionally assessed. RESULTS: Twenty-eight patients with vitiligo were found to have psychiatric morbidity, a clinic prevalence rate of 25 per cent (95 per cent confidence interval 20.3-29.3per cent). The majority of the cases had a diagnosis of adjustment disorder. Psychiatric morbidity was significantly correlated with dysfunction arising out of illness. CONCLUSIONS: Vitiligo is associated with high psychiatric morbidity. There is a need to develop cross-cultural database on psychosocial aspects and psychiatric morbidity associated with vitiligo.

Os aspectos psicológicos do vitiligo na criança: um estudo de caso clínico / The psychological aspects of vitiligo in the child: a clinical case study

Este estudo de caso clínico tem como objetivo identificar os aspectos psicossociais e eventos estressores no processo do adoecer e sua relação com as alterações da pele na criança, com vitiligo, revelada em sua história de vida; aprofundar e ampliar os conhecimentos sobre a psicodinâmica da criança através da psicoterapia infantil de orientação analítica; ja que a revisão literária em Psicologia é escassa e pouco sistematizada em se tratatndo de crianças com desordens psicossomáticas, como vitiligo, psoríase, alopécia areata. Na escolha do tema foi considerado o significado psicossocial do vitiligo e a demanda dos encaminhamentos de pacientes do Ambulatório, principalmente crianças, para o serviço de psicologia da Divisão de Reabilitação. Enquanto isso, no Instituto Lauro de Souza Lima, também estão sendo realizadas pesquisas e estudos em psicologia sobre alopécia areata e psoríase. O estudo foi realizado com uma criança de 11 anos, do "Instituto Lauro de Souza Lima" e portadora de vitiligo generalizado.

The Explanatory Model Interview Catalogue (EMIC). Contribution to cross-cultural research methods from a study of leprosy and mental health.

The Explanatory Model Interview Catalogue (EMIC) has been developed to elicit illness-related perceptions, beliefs, and practices in a cultural study of leprosy and mental health in Bombay. Leprosy is an especially appropriate disorder for studying the inter-relationship of culture, mental health and medical illness because of deeply rooted cultural meanings, the emotional burden, and underuse of effective therapy. Fifty per cent of 56 recently diagnosed leprosy out-patients, 37% of 19 controls with another stigmatised dermatological condition (vitiligo), but only 8% of 12 controls with a comparable non-stigmatised condition (tinea versicolor) met DSM-III-R criteria for an axis I depressive, anxiety or somatoform disorder. Belief in a humoral (traditional) cause of illness predicted better attendance at clinic.