Quality of Life

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Introduction and Historical Perspective

Vitiligo has a major impact on the quality of life of patients, many of whom feel distressed and stigmatized by their condition. In ancient Indian texts, vitiligo was referred by the name kilas (in Sanskrit, kil – white, as – throw or cast away), meaning one who throws away the colour. Since ancient times, patients of vitiligo have suffered the same physical and mental abuses as lepers of that age, and they were considered to have ‘shweta kustha’.

Vitiligo is particularly disfiguring for people with dark skin and carries such a social stigma in Indian society that patients are sometimes considered unmarriageable . Society greets vitiligo patients in as much the same way as it does anyone else who appears to be different.

In some parts of India, they are still stared at or subjected to whispered comments, antagonism, insult or isolation. A woman with vitiligo may face numerous social problems and experience great difficulties in getting married.

If vitiligo develops after marriage, it grounds for divorce by the husband. In some parts of India, disease is often considered as a punishment by God, presumably caused by unconscious feelings of guilt. Patients are subjected to various dietary restrictions like avoidance of milk, fish, citrus fruits, etc.

Modern Psychological Studies

Porter et al. in the late 1970s brought the psychosocial effects of vitiligo to the attention of dermatologists. A questionnaire survey among 62 vitiligo patients in a hospital-based outpatient setting indicated that two-thirds felt embarrassed by the disease, more than half of them felt ill at ease, and a majority of patients felt anxious, concerned and worried about the disease itself.

They also studied the effect of vitiligo on sexual relationship and found that embarrassment during sexual relationship was especially frequent for men with vitiligo. Many patients chose adapted clothing and used large amounts of cosmetics in order to hide the skin lesions.

Although 80% perceived their friends and family as supportive, strangers expressed less understanding, and patients felt uncomfortable meeting them. Salzer and Schallreuter reported that 75% found their disfigurement moderately or severely intolerable.

An important component of stigma and stigmatization is the impossibility of concealing the affected skin parts and consequent visibility. In a recent study, stigmatization experienced by vitiligo patients was found psychologically relevant since patients with visible lesions experienced a higher level of stigmatization.

Appearance of skin can condition an individual’s self-image, and any pathological alteration can have psychological consequences. Patients often develop negative feelings about their skin, which are reinforced by their experiences over a number of years.

Most patients with vitiligo report embarrassment, which can lead to a low self-esteem and social isolation. Facial vitiligo lesions may be particularly embarrassing, and the frustration of resistant lesions over exposed part of hands and feet can lead to anger and disillusionment.

Particularly in teenagers, mood disturbances including irritability and depression are common. Patients with vitiligo are extensively sensitive to the way others perceive them, and they will often withdraw, because they anticipate being rejected.

Sometimes, strangers and even close friends can make extremely hurtful and humiliating comments. The impact of such factors is profound subjecting them to emotional distress, interference with their employment or use of tension-lessening, oblivion-producing substances such as alcohol.

Severe depression has been known to lead to suicide attempts. Vitiligo can also result in problems in interpersonal relations and induce depression and frustration. In a study from India, vitiligo has been shown to be associated with high psychiatric morbidity .

One fourth of vitiligo patients attending a specialized clinic was found to have psychiatric morbidity, and a diagnosis of adjustment disorder was made in the majority of cases.
Psychiatric morbidity was significantly correlated with dysfunction arising out of illness.

Socio-economic and Educational Consequences

Patients often suffer financial loss because they have to take time off from work to attend hospital appointments to perform treatments such as photo_therapies. Lesions in exposed sites can adversely affect a person’s chances of getting a job at interview and so restrict career choices. Vitiligo beginning in childhood can be associated with significant psychological trauma that may have long lasting effects on personal self-esteem. Children with vitiligo usually avoid sport or restrict such activities and often lose vital days from school.

Quality of Life Evaluation

Most of the studies have used Dermatology Life Quality Index (DLQI), a widely validated questionnaire that is easy to use and allows comparison between several skin disorders. However, there is a need for a uniformly acceptable scale which can more specifically quantify psychosocial stress associated with this disease.

Moreover, this type of quality of life measures shall be useful as tool to assess treatment effectiveness or to compare treatment outcome. Although a limited number of studies have paid attention to the psychosocial effects of vitiligo, they point towards an appreciable psychosocial impact on those afflicted. Kent and Al’ Abadie found that the stigmatization experience accounted for 39% of the variance in the quality of life of vitiligo patients. On the other hand, self-esteem, a number of symptoms on the distress checklist, race and general health accounted for only 12% of the variance in quality of life.

There may be a relationship between stress and vitiligo since psychological stress can increase levels of neuroendocrine hormones, leading to a damage of melanocytes in the skin, and affect the immune system altering the level of neuropeptides. Recently, increased levels of neuropeptide-Y were shown in the plasma and skin tissue fluids of patients with vitiligo. Liu et al. studied the occurrence of cutaneous nerve endings and neuropeptides in vitiligo vulgaris and suggested that emotional trauma and stressful life events can cause large adrenal secretions and this can result in acute onset of vitiligo.

Because of the possible connection between stress and exacerbation of vitiligo, psycho logical and psychotherapeutic interventions may be helpful. In a study of 150 vitiligo patients, we assessed the nature and extent of the social and psychological difficulties associated with the disease and their impact on treatment outcome by using Dermatology Life Quality Index. Our study clearly demonstrated that patients with high DLQI scores responded less favourably to a given therapeutic modality.

Recently, many vitiligo-specific quality of life scoring systems have been developed like vitiligo impact scale (VIS), VIS-22, vitiligo specific quality of life (vitiQoL) and vitiligo impact patient scale. All these are well validated and correlate well with other general skin disease quality of life scores (like DLQI, Skindex), while catering specifically to the need of measuring quality-of-life impact of vitiligo, which extends much beyond the visible depigmentation.

These results suggest that additional psychological approaches may be particularly helpful in these patients. In a preliminary study by Papadopoulos et al. it has been shown that counselling can help to improve the body image, self-esteem and quality of life of patients with vitiligo as well as it may have a positive effect on course of the disease.

To conclude, vitiligo can have a tremendous effect on all spheres of one’s lives. A major part of this effect arises because of the lack of knowledge about this disease in masses and the resultant stigmatization. Through initiatives like world vitiligo day (celebrated each year on 25th June), and other information and education activities, the knowledge regarding vitiligo should be actively spread amongst the general population. That shall bring a positive change in the manner vitiligo is perceived by laymen.

Author: Anuradha Bishnoi and Davinder Parsad

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