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On-line version ISSN 1806-4841
An. Bras. Dermatol. vol.84 no.1 Rio de Janeiro Jan./Feb. 2009
Lucas S.C. NogueiraI; Pedro C.Q. ZancanaroII; Roberto D. AzambujaIII
in Dermatology and General Clinical Medicine. Professor, Universidade Catolica
de Brasilia (UCB) - Brasilia (DF), Brazil.
II3rd Year Resident Physician, Dermatology Center, Hospital Universitario de Brasilia (HUB) - Brasilia (DF), Brazil
IIIDermatologist, Hospital Universitario de Brasilia (HUB) - Brasilia (DF), Brazil
average, vitiligo affects one percent of the world population. More than 75%
of the patients have negative self-image on account of the disease. The emotional
impact of the dermatosis is frequently neglected by the caretaker, which has
negative influence on therapy and prognosis.
OBJECTIVE: To check the effect of vitiligo on patients emotions and discuss the mind-body interaction and its impact on the disease.
METHODS: In their first medical visit, one hundred patients with various forms of vitiligo answered a question about which emotions were elicited by the presence of the spots.
RESULTS: Eighty-eight percent of the patients with spots in exposed areas complained of unpleasant emotions versus twenty-seven percent of those with spots in unexposed areas. The most frequently referred emotions were fear, specifically of expansion of the spots (71%), shame (57%), insecurity (55%), sadness (55%) and inhibition (53%).
CONCLUSIONS: Chronic illnesses generate in human beings a negative experience propitiated by the expectation of suffering. Besides appropriate scientific guidance, vitiligo patients need emotional comfort. Treatment outcomes and patients compliance to it, and even their resilience to face occasional therapeutic failures, rely on good physician-patient relationship. At a time when doctors make use of reputable therapeutic resources, it is indispensable that dermatologists become able to evaluate the patient in an integrative fashion.
Keywords:Emotions; Physician-patient relations; Vitiligo
Vitiligo is one of the most intriguing dermatosis. In physical terms, it represents little on the skin, given that it is characterized by its scarcity of symptoms and it does not threat patient's integrity. Because of that, unfortunately, many physicians consider it to be a mere cosmetic affection, neglecting or disregarding the deep psychological effect it has on patients.
To support the patient, dermatologists should consider this aspect of the dermatosis and provide a more humanized perspective of the problem. One wrong word, inappropriate stress pattern, or misplaced sentence may have disastrous consequences to some subjects, severely impairing the treatment of the disease.
Statistics about vitiligo are variable, but it is believed that they may affect on average 1% of the world population. In general, figures show predominance of female gender, even though genetic studies do not confirm it 1.
The diagnosis is basically clinical. The type of spots, their distribution and absence of pigment are enough to determine the diagnosis in most cases. Wood's glass examination is very supportive in doubtful cases, showing sites in which the pigment was initially lost. Standardized histopathological examination with Hematoxylin-Eosin (HE) shows that vitiligo impairs the whole melanin unit of the skin, with abnormalities of melanocytes, keratinocytes and Langerhans cells, confirmed by electron microscopy 1,2,3.
The age at onset of lesions is variable, but it is rarely present at birth. Similarly, it may be more insidious or take an explosive progression, taking over large areas of body surfaces within less than 6 months. The basic distribution patterns are segmental and non-segmental, and the latter is the most known and the main paradigm of the disease 1,2,3.
There are different theories that explain the origin of vitiligo, but none of them can encompass it all separated. There is the autoimmune theory, the neurogenic theory, the autotoxic theory, the oxidative stress theory, and still we cannot definitely determine the cause of vitiligo. Probably, there are different factors combined together in each patient, which act over a basis and genetic determination.1,2,3,4,5
Upon assessing some factors that trigger the disease, we can once again realize that the emotional factor is very important in the onset of vitiligo. Traumas and burns (including sun exposure) have an important role in the origin of the problem for many patients, but in different studies up to 7.2% of the patients reported that the onset was related with emotional stress. It is not simple to transform this fact into clinical data, but the correlation made by the patients is highly suggestive. According to Al Abadie et al., stress increases the level of neuroendocrine hormones and autonomic neurotransmitters, which modifies the immune system and activates specific brain regions rich in neuropeptides, modifying their levels and favoring the antidromic release on skin. It could explain the onset of vitiligo in these patients 4,5,6.
Concerning the influence of stress on the dermatosis, it is likely that it may depend on a set of beliefs that the person has during life, unconsciously recorded in their life experience. Beliefs represent the truth to each person, so that different factors lead to different practical experiences in each person. It happens simultaneously in all fields of behavior: religious, politics, family, health, work, and others. We can classify two types of belief system: facilitating and limiting factors. The first one pushes up and the second one limits the advance of each person. It is important to point out that these beliefs are not conscious and depend on the interpretation of life facts individually 4,7,8.
Therefore, the created system of beliefs provide tools so that each person can use them to manage all situations, get encouraged or depressed. It has direct repercussions on the immune system, as confirmed by many different works in the area of psychoneuroimmunology. The vision of fear, disgust, cosmetic disadvantage that many patients experience because of their depigmentation creates a limiting system, which will cause serious consequences to the treatment outcomes.
A study by Schallreuter et al. confirmed that vitiligo patients have higher levels of noradrenaline in the body, and over 75% of them have derogatory self-image concerning the disease. According to the authors, there would be a correlation between high catecholamine levels and increase susceptibility to vitiligo and its progression 8. The presence of a neuroimmunocutaneous system defines the communication with the central nervous system in a chemical basis through the secretion and nervous endings and cutaneous components. Thoughts are processed at the limbic-hypothalamic system and transmitted to the skin, similarly to all other organs, through nerves and blood stream via chemical messengers. This is how the quality of our thoughts influences the skin, including the melanin unit. 4,5,6,7,8
For example, it has been confirmed that the calcitonin gene related peptide (CGRP) has modulating effect over Langerhans cells. These cells are in constant contact with epidermal nerves that segregate the peptide. Alpha MSH is also a potent immunomodulator, inhibitor of IL-1 and 2 and gamma INF production. Under the action of stress, CGRP inhibits the presentation of antigen to Langerhans cells and alpha-MSH acts as immunosuppressor 8.
Ahmed et al. observed 100 patients with vitiligo and tried to identify the presence of psychiatric disorders. They found 15 cases of major depressive disorder, 10 cases of generalized anxiety and other with anxiety/ depression, social phobia, agoraphobia and sexual dysfunction. They concluded that psychiatric disorders are probably related with vitiligo, and their frequency is influenced by the situations of the disease and the life and that major depression and anxiety remain as the most common psychiatric disorders among these patients 9.
The purpose of the present study was to check the effect of vitiligo on the emotions of patients, trying to understand how each one experienced the dermatosis. It requires physicians to have a broader focus, integrating body and mind. Many times, however, they fail to realize a complete and multidisciplinary approach to the patient because they ignore psychological aspects of the dermatosis and the person who is there. 8,10,11,12
MATERIAL AND METHODS
The authors have followed up 100 vitiligo patients with different forms of the disease and used a questionnaire about their perspective on vitiligo applied in the first visit. All patients have spontaneously answered the questionnaire and no one refused to do it. There was no previous guidance not direction of responses. There were no restrictions concerning educational and social level of patients, which also applied to age and gender.
Each questionnaire had one multiple-choice question. We asked the patients "What do you feel when you look or think about the spots?"
The following options were given: fear, shame, insecurity, inhibition, disappointment, unhappiness, bitterness, impatience, sadness, irritation, anger, disgust of oneself, lack of confidence, negative image before the others. Each patient could freely add other sensations, as well as deny those unpleasant feelings about the disease. The responses were marked in an individual form, and later analyzed by a second researcher.
Patients were subdivided into two groups: the first one had vitiligo in areas exposed by the clothes and the second had it only in covered areas. There was also division concerning age range.
Eighty-five percent of the patients had depigmentation in exposed areas and 15% in covered areas.
All patients accepted to answer the questionnaire. Eighty-eight percent of the patients who had spots in exposed areas manifested psychological complaints, whereas only 27% of those with spots in non-exposed areas complained of any disturbance. To them, vitiligo did not affect their social life in an important fashion. To the former group, the presence of spots caused considerable disturbance in their lives.
In the set of assessed patients, the most frequent points mentioned were: fear, specifically fear of dissemination of spots (71%), shame (57%), insecurity (55%), sadness (55%), inhibition (53%), disappointment (50%), impatience (43%), irritation (36%), unhappiness (35%), negative image before the others (35%), anger (26%), bitterness (25%), lack of confidence (25%), disgust of himself (18%), and others (16%). No patient pointed out any positive aspect concerning the disease, even though they could have done it (Graph 2).
In the option "other complaints", two percent of the patients included anger or dissatisfaction with the physicians, and one of them told the nickname the physician had to the disease (nem te ligo = play with words with vitiligo, meaning in Portuguese "I don't care").
In the vitiligo visit, the most significant fact to the patient is not the spots that cause no physical symptom or damage, but rather the interpretation they have for them. Vitiligo is devastating to patients and to family members. The most common manifestation is that the whole family comes to the visit if it is vitiligo in a child, showing that parents are really anxious. In spite of that, physicians normally pay no attention to the most severe aspect of vitiligo, focusing on therapeutic procedures and sometimes even discouraging treatment approaches because the disease is "only" cosmetic. This is due to the biomedical model in which physicians are trained, focusing only on the physical structure of the patient and disregarding anything that cannot be measured, even though it is observed. For this reason, physicians are not prepared during medical school to get interested by psychological or emotional aspects of the patients, let alone be trained to provide initial effective support. It is evident that most articles and books about vitiligo do not allude to personal life effects and psychological and emotional aspects of patients, which seems to mean that these elements simple do not exist. Authors also reinforce the biomedical concept in the mind of those who read them.
Judith Porter et al., upon investigating personal responses of patients with vitiligo, stated that most physicians think that vitiligo is a disease of few consequences, because they simply see the importance of the disease based on the tendency it has to compromise physical activity or posing a threat to the victim's life. An increasing amount of sociological and psychological data have shown that cosmetic disfiguration may have serious consequences on the life of a person or create social embarrassment, anxiety and shame" 13. The same author, when focusing on the effect of vitiligo on patients' sexual life, noticed that 23% of the 100 interviewed patients reported that the dermatosis had negatively interfered in their sexual activity, some because of their own embarrassment, others because of the embarrassment of the partner 14.
Psychologist Linda Papadopoulos has stated that owing to the fact that we do not precisely know about progression of the presentation and do not know how to prevent the onset of new spots, the vitiligo patient may spend life with fear that nonspecific behaviors may lead to onset of new lesions and, thus, social and emotional impact of this condition is considerable 15.
It is indisputable that any perspective of a chronic disease produces negative experiences in human beings because of the anticipating of suffering, in addition to the doubts about how this fact will be understood by loved ones and the society in general. Since the beginning of times, human beings have faced the eminent sensation of change and some subjects have shown throughout generations that they are more likely to overcome some difficulties.
Certainly, diseases such as psoriasis, AIDS, diabetes and vitiligo represent a challenge to the self-esteem of any subject, but among them all, vitiligo is certainly the most mysterious one.
Our current time supervalues esthetics and beauty. The other mentioned diseases may be hidden or neglected during many phases of life, a fact that can hardly happen with vitiligo. Such specificity may represent huge difficulties to most people. This aspect is more evident when we check the great different in perception of the disease, by comparing groups of patients with disease in exposed areas as opposed to those that have the disease in hidden areas of the body. Moreover, the sensation of negative image before other people reaches 35% of the patients in this group, reinforcing this reasoning. In the studied group, 73% of the patients were affected by the presence of spots. In this group, the fear that the spots would disseminate through the body was the predominant emotion, followed by shame, insecurity, sadness, inhibition and disappointment. It all led to low self-esteem of the patients. The feeling of conveying a negative image to other people and lack of self-confidence are other disastrous results that interfere in the performance of people at work and in social relationships.
Other important data concern that 85% of the patients presented the disease at an age range of greater exposure and productivity, between the ages of 20 and 59 years, which is why it causes severe social, sexual and professional limitations. The catastrophic impact that such limitations might have on people's psychological development goes without saying.
Another important fact, even though not that impacting from a numerical perspective, is the complaints that patients have against healthcare professionals.
We currently experience the dictatorship of healthcare plans and high turnover in medical offices, making medical visits be ruled by the logic of time and objectivity. Unfortunately, to appropriately manage vitiligo, this structure has to be subverted. In addition to the correct scientific approach, vitiligo patients need emotional comfort, which should not be seen as paternalism. The response and compliance to treatment and even resilience in face of therapeutic failures depend on good physician-patient relationship.
Dr Porter has reported that 45% of the patients did not think their physicians were emotionally involved with their conditions nor attentive to their questions. They did not give satisfactory answers to their questions about origin of disease, current status of research studies and relation of vitiligo with cancer; physicians were perceived by them as distracted or not interested in vitiligo and their effects 13. In good dermatological practice we should no longer accept the use of mocking expression to try to disregard the importance of the problem to the patient. It should rather mean what can be done to avoid being bothered by the disease. What is even worse is to say to patients "there is no cure", which makes patients hopeless, in addition to being scientifically incorrect. Alternatively, physicians should have a nourishing attitude with their patients because emotional support and stimuli are important in treatment compliance and in the favorable reaction of the body to treatment, plus the prescriptions and reducing stress. It may contribute to a more favorable reaction of the patient's body. We have observed that highly stressed patients respond poorly or do no respond at all to therapeutic approaches. Apparently, the action of stress goes beyond the action of drugs.
It is clearly observed that vitiligo is a dermatosis of great psychological, emotional and social repercussions to patients. Even though there are no means to confirm the correlation between hope and positive expectation and favorable response to treatment - which was not the goal of this study - it is evident that patients with such disposition have better outcomes in different therapy approaches currently available to vitiligo. At a time when we have a respectable therapeutic arsenal to treat the disease, such as UVB phototherapy (narrow band), laser, UVA phototherapy and psoralenic agents, hypnotherapy in addition to the traditional methods with brosimum, corticosteroids and others, dermatologists should be apt to have a holistic understanding of their patients, providing better perspectives of solving the spot problems and above all, showing interest, stimuli and understanding in this journey, rather than acting as a cold technician.
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How to cite this article: Nogueira LSC, Zancanaro PCQ, Azambuja RD. Vitiligo e emoções. An Bras Dermatol. 2009;84(1):39-43.