Management of vitiligo patients and attitude of dermatologists towards vitiligo

ARTICLE

Auteur(s) : Katia ONGENAE, Nanny VAN GEEL, Sofie DE SCHEPPER, Yves VANDER HAEGHEN, Jean-Marie NAEYAERT

Department of Dermatology, Ghent University Hospital, De Pintelaan 185, B-9000 Gent, Belgium

Article accepted on 11/03/2004

Vitiligo is one of the most prevalent acquired skin pigmentation disorders, affecting at least 1% of the total population regardless of age or gender. The disease is characterized by the development of milky white patches, often with a typical symmetrical distribution pattern and frequently involving exposed areas. The exact pathogenetic mechanism leading to vitiligo is unknown. As the cause of vitiligo is unknown, we have to rely on symptomatic treatment strategies in order to stabilize the disease and repigment the achromic patches.
Although vitiligo does not physically impair its sufferers, the disease may cause a considerable level of distress due to its disfiguring nature [1, 2]. In an outpatient sample, we previously demonstrated comparable quality of life impairment in women with vitiligo and psoriasis patients [3]. Other psychosocial repercussions of vitiligo are demonstrated in a number of studies [1, 2, 4-7]. In general, many physicians tend to consider those diseases that do not limit physical activities or are not life-threatening unimportant [6]. Vitiligo patients often experience indifference from the doctors towards their skin problem, and do not feel adequately supported by them [6-9]. The importance of the patient-physician interaction in the management of vitiligo, especially the supportive relationship between patient and doctor has been demonstrated [8]. A considerable number of patients seem to be badly informed about several aspects of vitiligo such as treatment, causes, heredity, ... [7-9]. They are worried and harbour a lot of unanswered questions about the disease. Physicians at large are reported to be indifferent to the importance of treatment [10]. However, even if most treatments are only partially effective, incomplete results may reduce the psychosocial burden. Two thirds of patients treated with psoralens and ultraviolet light found the treatment partially effective and worthwhile [8]. As found in many of the above-mentioned studies, we also are repeatedly confronted in our vitiligo clinic with patients who experienced disinterest and indifference from the medical world towards their skin problem. In view of these observations we attempt to evaluate the management of vitiligo patients by dermatologists in Belgium, both as reported by themselves and as experienced by the patients. We also evaluate the attitude of dermatologists towards the disease and its treatment.

Subjects and methods

Subjects

This survey was conducted with the permission from the Ethical Committee of the University Hospital of Ghent. It consisted of 244 vitiligo patients who were visiting the Dermatology Department at the University Hospital of Ghent. We also sent a questionnaire to all 558 members of the Royal Belgian Society of Dermatology. A second mailing was sent 2 months later to non-responders. In total 454 dermatologists returned the questionnaire in due order.

Methods

Vitiligo patients answered questions about demographic data and the following disease characteristics: presence of a family member with vitiligo, disease duration, membership of a patient support group, number of doctor visits related to their vitiligo and time since the last visit and current or past treatment. These questions are mentioned in Table I. Disease severity was rated by the patient for different localisations (face/head/neck, hands, arms, trunk, genital area, legs, feet, others) as not-mildly-moderately-severely (0-3) affected. A total severity score was calculated by adding up the disease severity scores for different areas: face/head/neck, hands, arms, legs, feet, trunk, genital and others giving a maximal score of 24. The number of at least mildly affected sites was considered to reflect the extent of the disease. We also asked for the approach of the dermatologist they first consulted regarding their vitiligo (questions in Fig. 2).

The questionnaire sent to dermatologists assessed their management of vitiligo patients and asked for the following information: number of vitiligo patients seen in the past year, whether they regard vitiligo as a cosmetic disorder, whether or not they provide information to the patients concerning the disease (e.g. etiology) and its potential treatments, their indications to treat vitiligo, their expected results of treatment, their criteria for a successful treatment and their attitude towards the patient in terms of motivation and encouragement to treat. This questionnaire is added in Table II.

Table II. Dermatologist’s questionnaire

Statistical analysis was performed with the SPSS 11.0 statistical package. The chi-square measure was used to test the relationship between two categorical variables. The non-parametric Mann-Whitney U-test was used to test the equality of distributions of a continuous variable over two populations, with p < 0.05 taken as statistically significant.

Results

Vitiligo patients

The questionnaire was completed by 244 vitiligo patients (68% women, 32% men), all Caucasians, who had visited the dermatology clinic of the University Hospital of Ghent between 1999 and 2002. The mean age of the patient group was 40 years (SD 13.7), 22% of the subjects lived alone and 69% had an active work status.

Disease related characteristics

The data in Table I indicate that vitiligo patients do not often visit a dermatologist concerning their disease and do not often treat their disease. Indeed, for a median disease duration of 13 years, only half the patients visited the doctor 5 or more times ! The median time since the last visit to a dermatologist was 1 year. Also, a majority of patients (72%) did not treat the disease at the time of the survey, and about 40% of the patients had never treated their disease at all. Disease localisation and reported severity for each affected site reflect the widespread clinical distribution of vitiligo (Fig. 1).
We found a significant difference in number of visits to a dermatologist between the sexes with a higher frequency for women (p = 0.009). Patients who had ever treated their disease (p < 0.0001), those with longer disease duration (p = 0.004) and those who are members of a patient support group (p = 0.005) visited a dermatologist more often since the onset of the disease. The number of visits to a dermatologist is significantly related to the total severity score (p = 0.001), but not to disease extent (p = 0.07). We have to remark that the disease severity was scored at the time of the survey while the number of consultations refers to a period before. As expected, total disease severity and extent of the disease is significantly related with disease duration (p < 0.0001), suggesting a gradual increase of disease severity in time. Those who reported a higher disease severity at the time of the survey most likely had a higher disease severity in the past. We found no correlation between disease severity and time elapsed since the last consultation, suggesting that the current disease severity did not compel patients to visit dermatologists more frequently. Disease severity and extent of the disease are not related to whether there has ever been treatment or current treatment.

The approach of the dermatologist first visited regarding vitiligo

Half of the patients report having received adequate information about the disease and adequate answers to all their questions. About two thirds of the patients were told that nothing can be done about vitiligo and that they have to accept and learn to live with the disease. Only 50% of patients were adequately informed about possible treatment options and 40% were encouraged to follow a treatment. We found a significant correlation between ever having had treatment and knowledge of treatment information (p = 0.002) or encouragement to treat (p < 0.0001). Out of those who were informed about treatment, 70% had ever treated their disease versus only 50% out of those who were not informed. Of those who were encouraged to follow treatment, 80% had ever treated their disease versus only 50% out of those were not. These data are summarized in (Fig. 2).

Dermatologists

Out of 558 questionnaires sent to Belgian dermatologists, 454 were returned in due order, corresponding to a response rate of 77%. Belgian dermatologists reported seeing on average about 11 vitiligo cases in the past year. Vitiligo is considered a pure cosmetic problem by 48% of the dermatologists, the disease is a partial cosmetic problem to 43% of them, while the remaining 9% do not consider vitiligo as a cosmetic issue.

Information about disease and treatment

Nowadays, nearly all Belgian dermatologists (98%) report largely informing their patients about vitiligo. A majority (88%) explain the possible different causes of the disease while 17% limit themselves to saying that the etiology is unknown. With regard to treatment, 57% of the dermatologists agree that there is nothing to be done about the depigmentation and 22% consider camouflage as the only therapeutic option. Only 36% of the dermatologists motivate and encourage their patients to treat the disease. Treatment indications and expectations of treatment are given in Fig. 3. For the dermatologist, patient motivation is reported as the most important indication to treat vitiligo. Other factors each mentioned by less than 4% of the dermatologists which play a role in the initiation of treatment are: localisation, recent onset and psychosocial impact. Stabilisation and/or repigmentation is expected in less than 30% of the cases by 75% of the dermatologists.

Discussion

This survey evaluates the management of vitiligo patients in Belgium both from the point of view of patients and from the point of view of dermatologists. The mean disease duration in our patient population is 13 years. Therefore, the dermatologist’s management of vitiligo at the patient’s first visit will likely not correspond to today’s management as reported by dermatologists. However this important time span may give us an idea of the evolution in patient management in the past decennium. Note that we are comparing two different sources of information: the patient’s experience and the dermatologists’ report, and bias is not excluded. The majority of patients included in this study are women and a considerable percentage are members of a patient support group. We previously reported the higher psychosocial burden of vitiligo in those patient subgroups [3], making it more likely for them to consult concerning their disease and to be recruited in this study.

The number of patients seen by a dermatologist in the past year and the number of doctor visits reported by the patients suggest that vitiligo is not a frequent reason for consulting a dermatologist in Belgium. Mainly the disease severity as subjectively assessed and experienced by the patient initiates a doctor visit, regardless of treatment or sex. The severity score used is a subjective measure, closely related to the quality of life impairment and the psychosocial repercussion experienced by the patient [3]. This indicates that patients who visit a dermatologist are embarrassed and concerned by their disease. Consequently, the approach of these patients is an important issue and should cover their needs.

In earlier studies over two thirds of the patients described themselves as worried and harboured unanswered questions about their disease [9]. Informing the patients on different aspects of the disease such as etiology and clinical course and reassuring them about its benign and non-infectious nature were identified as important aspects in the management [6, 9]. However, our study shows that 50% of the patients did not feel well enough informed about vitiligo when visiting a dermatologist for the first time. Today these needs appear to be addressed as 98% of all Belgian dermatologists report largely informing their patients.

A considerable percentage of patients did not treat their disease in the past or at the time of the survey. Subjective disease severity rather than extent seems to motivate the search for medical help but these disease characteristics did not initiate treatment in the past or present. This suggests that although patients feel concerned by their vitiligo, they may have been discouraged from treating their disease and our study points towards a potential contributing factor: encouragement to treat and information on treatment modalities are identified as important motivating factors but were only dispensed to 40% to 50% of the patients. Moreover, about two thirds of the patients received the discouraging message that nothing can be done about vitiligo. The latter point of view about vitiligo is acknowledged by two thirds of the dermatologists. Only 36% of them motivate and encourage the patients to treat their disease and 20% consider camouflage the only valuable option. Njoo et al. reported in a recent study that 68% of the dermatologists in the Netherlands do not advise actively treating the disease confirming the negative attitude of dermatologists towards treating the disease in the Netherlands [11].
The reluctance of dermatologists to treat vitiligo is undoubtably related to their pessimism about treatment expectations: 75% expect repigmentation or stabilisation in less than 30% of the patients. Today only symptomatic treatment options are available to stabilize the disease or induce repigmentation. Classical medical treatments such as UV and topical steroids have been shown to be successful for this purpose, with reported repigmentation rates of more than 75% in 50% to 60% of the patients [12, 13]. Surgical techniques are also available to treat stabilized disease and offer more than 75% of repigmentation in 72% to 87% of the patients [14]. In the last decade new treatment modalities have been reported, introducing new topical treatments such as vitamin D [15], high-intensity UVB therapy [16] or lately topical immune modulators [17, 18] and also new transplantation techniques [19]. A growing number of controlled studies [20-24] evaluating these therapies should enable dermatologists to position these treatment options in the management of their vitiligo patients and allow correct and reliable information concerning the therapeutic results that can be expected from the therapies undertaken. Aside from degree of repigmentation, quality of life assessment has been introduced as important outcome measure [24]. A majority of dermatologists consider patient motivation as an important indication for treating the disease. We believe that adequate information about the disease and the treatment is essential for the patient in determining his motivation to treat his disease. Evidence-based guidelines for treatment of vitiligo should help and support dermatologists in the future to improve their patient management [25]. Our patients treated their disease irrespective of disease severity or extent and found it worthwhile in 60% of cases. Similar percentages were found in another study [8] and this should encourage more dermatologists to offer treatment to their patients.

Conclusion

In the past, vitiligo patients were insufficiently informed about the disease and its treatment possibilities and often received the message that the disease is untreatable when they first visited a dermatologist. This may have discouraged patients from getting medical help and treatment. However, a majority of patients find it worthwhile treating their disease. Today dermatologists claim to inform their patients about the disease but remain reluctant to treat vitiligo. The opportunity to treat should be offered to patients after providing them all with the information on disease characteristics, potential treatment options and related treatment outcome. n

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