© Springer India 2017Evangeline B. Handog and Maria Juliet Enriquez-Macarayo (eds.)Melasma and Vitiligo in Brown Skin10.1007/978-81-322-3664-1_30
30. Vitiligo and Quality of Life
Sector of Dermatology and Post-Graduation Course, University Hospital and School of Medicine, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil
KeywordsBrown skinQuality of lifeVitiligo
The World Health Organization (WHO) defined quality of life (QoL) as “the perception of the individual regarding his position in life, the context of cultural and value systems in which he lives, and in relation to his objectives, expectations, rules and references” . QoL is a multidimensional term determined not only by health aspects. Multiple nonmedical aspects shape its relevance (i.e., socioeconomic situation and degree of independence; professional career, personality, and psychological state; social relations and relations with the environment; happiness, ambition, beliefs, expectations, and religious experience) .
The QoL theme has already been raised by philosophers along the entire human history. In the IV century BC, Socrates stated that the most important is not life itself but its quality. Since 1948, when the WHO defined health as being not only the absence of disease and sickness but also the presence of physical, mental, and social well-being, aspects related to QoL had been growing in relevance in the assistance and investigation of health issues. The first clinical publications incorporating the term QoL appeared in the 1960s of the past century, and the last quarter of that century saw a dramatic increase regarding interest in QoL .
30.2.1 Quality of Life in Dermatology
Skin diseases have always caused an adverse effect on the life of patients. However, only in the last 20 years has this effect begun to be measured consistently through QoL studies . There is a great interest in the evaluation of QoL in dermatological afflictions, given that these diseases usually have a significant impact in social relations, in the psychological state of mind, and in daily activities . Since expectations regarding health and the ability to cope with limitations and incapacities can affect an individual’s perception and satisfaction, two individuals with the same clinical health state may have different impacts regarding their QoL .
30.2.2 Quality of Life in Vitiligo
Since vitiligo does not cause physical deficiency, it is often considered only a cosmetic problem. However, alterations caused by this disease can affect the emotional and psychological well-being of the patient and entail important repercussions in his life. Additionally, vitiligo is a chronic disease with unpredictable natural course turning it into a burden on the QoL of the patients. The disease, which usually has its onset at a time in life where people begin to consolidate their individuality and sexual identity, can have a great impact on the self-image, self-esteem, and interpersonal relations. Actually, it has been reported that people with vitiligo have a negative self-image of their body with low corporal self-esteem. Furthermore, they may suffer stigmatization making them ashamed of their body and damaging their social life . It seems inadequate therefore that to describe the severity of the disease, merely physical indicators are used (i.e., affected body surface area (BSA) or the number of body locations affected). Only 9 % of the studies that evaluate the efficacy of the treatment apply QoL as one of their references . The evaluation of QoL requires specific instruments for its assessment in order to provide a detailed image of the individual impact caused by the disease.
30.3 Instruments for Evaluation of QoL in Dermatoses in General
In order to measure QoL, it is necessary to understand the factors that influence it. Despite existence of several definitions for QoL, the majority of the researchers agree that the factors involved can be classified into two main groups: objective and subjective. The subjective factors include the self-evaluation of the physical condition, mental condition, and social and interpersonal relations; on the other hand, objective factors are those related to medical and psychological diagnoses, results from laboratory exams and socioeconomic status .
30.3.1 Dermatology Life Quality Index (DLQI)
DLQI was developed by Finlay and Kahn in 1994. It was the first questionnaire specifically destined for QoL in dermatology. Of simple construction and with easy routine application, it has already been used in over 272 studies in 32 countries, being available in 55 languages. The questionnaire assesses the events that occurred in the foregoing week, allowing an easy recollection by the patients and can thus be used in comparative studies. The DLQI comprises ten questions addressing six different domains (symptoms, daily activities, leisure, work or school, personal relations, and treatment), and its score varies from zero (least impact in the QoL) to 30 (highest impact in QoL) .
30.3.2 Children’s Dermatology Life Quality Index (CDLQI)
CDLQI was developed in 1995 based on the impact of dermatoses on children’s QoL. It presents a similar score structure as DLQI and is recommended to be used for children over 7 years of age . Subsequently, in 2003, an illustrated version of the CDLQI was created, faster and easier to fill out, being preferred by parents and children .
Skindex is a useful instrument to measure QoL in patients with different cutaneous diseases. In its initial structure, it comprised 61 items divided in eight dimensions (cognitive effects, social effects, depression, fear, embarrassment, irritation, physical discomfort, and physical limitations) . This is an extensive questionnaire with questions addressing the past 4 weeks, with excellent validity and reliability. Afterward, it was reduced to 29 items, originating the Skindex-29 , and later shortened again to 16 items, becoming Skindex-16 .
30.4 Specific Instruments for the Evaluation of QoL in Vitiligo
Recently, some authors have proposed the creation and validation of scales regarding the QoL evaluation, specifically aimed at vitiligo.
30.4.1 Vitiligo Quality of Life Scale (VitiQoL)
VitiQoL is a scale with 15 items that incorporates the majority of information from preexistent questionnaires specifically aimed at vitiligo and its impact in the foregoing week, with good reliability .
30.4.2 Vitiligo Life Quality Index (VLQI)
VLQI is a form with 25 questions regarding vitiligo, adapted from existent questionnaires and with new additional questions aimed at specific dermatoses such as the Psoriasis Quality of Life Scale (PSORIQoL), Acne Quality of Life Scale (AQOLS), and Atopic Dermatitis Quality of Life Scale (QoLiAD), presenting converging results with DLQI when tested simultaneously .
30.5 QoL in Vitiligo Patients
Vitiligo patients, on the average, present a moderate DLQI score (ranging from 4.4 to 17.1), comparable to other dermatoses as psoriasis and atopic dermatitis. Additionally, DLQI is correlated to the extension of the affected BSA. Individuals with over 25 % affected BSA present difficulty in the performance of daily tasks (i.e., shopping, gardening, or choosing clothes) and difficulties in socializing (i.e., taking part in sport activities or begin and maintain affective and sexual relations) .