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.

Assessment of quality of life of patients with leprosy reactional states treated in a dermatology reference center.

BACKGROUND: Disabilities and deformities resulting from reactive outbreaks of leprosy can cause many problems for the patients, interfering with their quality of life. OBJECTIVES: To assess the quality of life of patients with leprosy reactional states identified at the Reference Center in Belo Horizonte - MG. METHODS: This was an epidemiological cross-sectional descriptive and analytical study, involving 120 patients in treatment for leprosy reactional states, from December 2007 to March 2008, held at the Dermatology outpatients clinic of the Hospital Eduardo de Menezes from FHEMIG, BH. We used two instruments for the socio-demographic, economic and clinical variables and a generic instrument WHOQOL WHO. The data were tabulated in SPSS and analyzed using the mean score with the application of statistical tests (p <0.05). RESULTS: We found that the median age of the patients was 48 years, most were males, married, from cities around BH, with incomplete elementary school, retired or pensioner, and with a family income of two minimum wages. Most of them reported that the disease interfered a great deal with their professional activities and leisure. In the assessment of QoL, the lowest rating was observed in the physical domain and the highest was observed in the psychological and social relations. The internal consistency of WHO-QOL-bref was acceptable to the facets and domains. CONCLUSIONS: Leprosy causes suffering that goes beyond the pain and discomfort strictly related to the physical damage, with great social and psychological impact.

Assessment of quality of life of patients with leprosy reactional states treated in a dermatology reference center / Avaliação da qualidade de vida de pacientes em surto reacional de hanseníase tratados em centro de referência

BACKGROUND: Disabilities and deformities resulting from reactive outbreaks of leprosy can cause many problems for the patients, interfering with their quality of life. OBJECTIVES: To assess the quality of life of patients with leprosy reactional states identified at the Reference Center in Belo Horizonte - MG. METHODS: This was an epidemiological cross-sectional descriptive and analytical study, involving 120 patients in treatment for leprosy reactional states, from December 2007 to March 2008, held at the Dermatology outpatients clinic of the Hospital Eduardo de Menezes from FHEMIG, BH. We used two instruments for the socio-demographic, economic and clinical variables and a generic instrument WHOQOL WHO. The data were tabulated in SPSS and analyzed using the mean score with the application of statistical tests (p <0.05). RESULTS: We found that the median age of the patients was 48 years, most were males, married, from cities around BH, with incomplete elementary school, retired or pensioner, and with a family income of two minimum wages. Most of them reported that the disease interfered a great deal with their professional activities and leisure. In the assessment of QoL, the lowest rating was observed in the physical domain and the highest was observed in the psychological and social relations. The internal consistency of WHO-QOL-bref was acceptable to the facets and domains. CONCLUSIONS: Leprosy causes suffering that goes beyond the pain and discomfort strictly related to the physical damage, with great social and psychological impact.

FUNDAMENTOS: As incapacidades e deformidades decorrentes dos surtos reacionais de hanseníase podem acarretar inúmeros problemas aos pacientes, interferindo na qualidade de vida. OBJETIVOS: Avaliar a qualidade de vida de pacientes portadores de hanseníase em estado reacional identificados em centro de referência de Belo Horizonte, MG. MÉTODOS: Trata-se de um estudo epidemiológico transversal, descritivo e analítico, envolvendo 120 pacientes em tratamento de surto reacional de hanseníase, no período de dezembro de 2007 a março de 2008, realizado no ambulatório de dermatologia do Hospital Eduardo de Menezes da Fhemig. Foram utilizados dois instrumentos referentes às variáveis sociodemográficas, econômicas e clínicas e o instrumento genérico WHOQOL-bref da OMS. Os dados foram tabulados no SPSS e analisados por meio do escore médio com aplicação de testes estatísticos (p < 0,05). RESULTADOS: Constatou-se que a mediana da idade dos pacientes estudados foi de 48 anos, sendo a maioria deles do sexo masculino, casada, de cidades circunvizinhas a BH, com primeiro grau incompleto, aposentada ou gozando de licença saúde e com renda familiar de um a dois salários mínimos vigentes. A maioria deles relatou que a doença interferiu muito nas atividades profissionais e de lazer. Na avaliação da QV, o índice mais baixo foi observado no domínio físico e os mais altos foram observados nos domínios psicológico e das relações sociais. A consistência interna do WHOQOL-bref foi aceitável para as facetas e domínios. CONCLUSÕES: A hanseníase causa sofrimento que ultrapassa a dor e o mal-estar estritamente vinculados ao prejuízo físico, com grande impacto social e psicológico.

Leprosy stigma: ironing out the creases.

Oft-cited as a deterrent to elimination of the disease, stigma is still a critical feature of the leprosy landscape leading to ostracism, loss of employment, loss of housing, ridicule and rejection from society. The reason for leprosy-stigma rests historically and culturally on the mythology about the disease's origin and transmission, and its aesthetic features such as the enigmatic physical disfigurement, and the distinctive ulcers consequent of untreated leprosy. While the literature on leprosy has been consistent in showing that stigma is a social complication of the condition worldwide, there is seldom recognition of processes of stigmatisation in broader contexts. Effective and sustainable interventions directed at curbing leprosy stigma and so improving its social course must, however, be informed by an appreciation of such contexts; particularly in the light of the goal to eliminate the disease worldwide. Examining stigma in the broader contexts of historical, social, economic, political contexts is the aim of this paper. The paper also has implications for broad ranging intervention efforts aimed at de-constructing leprosy-stigma in order to craft a more accommodating ambiance of acceptance, care and support for people affected by leprosy.

Leprosy, the key to another kingdom.

OBJECTIVE: In India, many people affected by leprosy still live in self-established settlements, commonly referred to as leprosy colonies. Aid organisations generally attribute the social segregation of colony members to the stigma attached to leprosy. In this article, I argue that the common approach towards leprosy colonies is actually based on a limited understanding of social relations between colony members and others. The insights from this study will hopefully facilitate re-thinking current approaches to stigma reduction in leprosy. DESIGN: An ethnographic study conducted over a period of three months in and around a leprosy colony in India. With the help of a local research assistant, I carried out semi-structured interviews, informal conversations, and participant as well as non-participant observation. I conducted interviews with 22 colony members and 25 residents from the adjacent neighbourhoods of the colony. RESULTS: This study reveals that the differentiation between colony members and others derived at least as much from community membership as from stigma. Leprosy-affected people living outside the colony, for example, perceived the colony members as widely different from themselves, whilst stigma affected both groups. Programmes with the aim of reducing stigma need to approach stigma relations as embedded in various interrelated physio-emotional and socio-cultural processes, rather than approaching social aspects of leprosy by focusing exclusively on the notion of stigma.

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.

Participation level of the leprosy patients in society.

The present study examines the soci-demographic profile and participation restriction level of the respondents and the association of gender socio-economic status (SES) and deformity status of the respondents with their respective participation restriction level. 245 leprosy patients have been selected for the present study. Socio-economic scale, participation scale and in-depth interviews were used for data collection. Data analysis was done by using statistical package for social sciences (SPSS). 57.1% belonged to poor SES followed by lower-middle (21.6%). Only 12% of respondents belonged to high SES. Out of 245 respondents, 32.20% had grade II deformity 31.40% grade I and the rest 36.3% non-deformed. The results of the participation scale showed that 54.28% had no significant participation restriction and only 3.67% had extreme participation restriction. SES and deformity status of the respondents have shown significant differences with the level of participation restriction. The lower the SES and the severe the level of deformity of the respondents, the extreme is the level of participation restriction among them.

[Social rehabilitation experiences of people with a history of Hansen's disease: interviews of readmitted residents in a sanatorium].

PURPOSE: This study focused on the reflections of people with a history of Hansen's disease who once experienced social life and then returned to their sanatorium again. The purpose was to clarify what they think about their experiences of social life outside of institutions. METHOD: Study participants were people with a history of Hansen's disease who had experienced social life outside of the sanatorium and are now living in a national sanatorium with good ADL. The study was based on a semi-structured interview, the data being categorized with the focus on "situations or topics affect by Hansen's disease". Thirteen people agreed to participate in the study. RESULTS AND DISCUSSION: Six categories were abstracted: "maintaining a good condition," "anxiety about relapse or illness," "medical service," "coping with Hansen's disease in social life," "relationships with others," and "means of livelihood." Hansen's disease affected their lives in 2 aspects; one was "sawagu (recurrence of the disease)" and the other "kakusu (concealing the disease)." "Sawagu" was related to "anxiety of the disease" and "intention of maintaining a good condition." "Kakusu" affected the way of "coping with the disease in social life" and "the relationship with others." "Medical service" was important for both "sawagu" and "kakusu." Patients were visiting hospitals and taking medicine to avoid "sawagu," while trying to "kakusu" when they consulted with physicians. Similarly, both "sawagu" and "kakusu" interacted with each other when the participants needed to work and earn a living. All participants looked back at their social life as a "good experience" because they were satisfied with the sense of accomplishment or fulfillment the experience had given them. CONCLUSION: Participants of the study looked back at their social life as a "good experience." Hansen's disease affected their social life in 2 aspects; "sawagu" and "kakusu." It is necessary to alleviate difficulties with both of these so that people with stigmatized disease such as Hansen's disease can maintain normal lives in society.

Population survey to determine risk factors for Mycobacterium leprae transmission and infection.

BACKGROUND: Not every leprosy patient is equally effective in transmitting Mycobacterium leprae. We studied the spatial distribution of infection (using seropositivity as a marker) in the population to identify which disease characteristics of leprosy patients are important in transmission. METHODS: Clinical data and blood samples for anti-M. leprae ELISA were collected during a cross-sectional survey on five Indonesian islands highly endemic for leprosy. A geographic information system (GIS) was used to define contacts of patients. We investigated spatial clustering of patients and seropositive people and used logistic regression to determine risk factors for seropositivity. RESULTS: Of the 3986 people examined for leprosy, 3271 gave blood. Seroprevalence varied between islands (1.7-8.7%) and correlated significantly with leprosy prevalence. Five clusters of patients and two clusters of seropositives were detected. In multivariate analysis, seropositivity significantly differed by leprosy status, age, sex, and island. Serological status of patients appeared to be the best discriminator of contact groups with higher seroprevalence: contacts of seropositive patients had an adjusted odds ratio (aOR) of 1.75 (95% CI 0.922-3.31). This increased seroprevalence was strongest for contact groups living < or =75 m of two seropositive patients (aOR = 3.07; 95% CI 1.74-5.42). CONCLUSIONS: In this highly endemic area for leprosy, not only household contacts of seropositive patients, but also people living in the vicinity of a seropositive patient were more likely to harbour antibodies against M. leprae. Through measuring the serological status of patients and using a broader definition of contacts, higher risk groups can be more specifically identified.

Delineating disease: self-management of leprosy identities in South India.

The national and international agencies working to eliminate leprosy are also dominant in setting the boundaries of official discourse on the issue. Within these boundaries the disease is commonly represented as a medical problem with negative social consequences, and it is believed that both problem and consequences will be resolved if leprosy is eliminated and its victims treated and (if necessary) reintegrated within their social groups. For those affected by leprosy the issues are frequently different, elimination in some respects representing a problem as much as a solution. Against this background, which I describe with reference to a group of leprosy-affected people in South India and their position vis- -vis leprosy organizations, I explore some of the contexts in which leprosy patients actively manage their own situations, often in defiance of prevailing development orthodoxies. I conclude that closer observation and analysis of the strategies patients use to manage their disease status have important policy implications.

[Case report revisited: review of the 6 cases].

Out of the cases we experienced in our 11-year service in sanatorium, 6 cases were selected to review the medical care and social environment that each patient was involved. Two cases were the residents in a sanatorium and 4 cases were in the community, including 2 cases having foreign nationality. The review of these cases drew the following conclusions. 1. We must be aware of our responsibility for early diagnosis and treatment of leprosy to prevent tragic disability. 2. The fixed duration of MDT/MB may not be enough for LL cases having high bacterial load before treatment. Enough duration of chemotherapy and follow-up is desired to prevent avoidable disability. 3. Basically, the treatment of leprosy should be carried on in outpatient clinic. The duration of hospitalization, if necessary, should be shortest to enhance patient's motive for treatment. 4. Intermittent administration of RFP must be done under direct observation. 5. For foreign patients not accustomed to the life in Japan or elderly patient living by oneself, various supports from community are greatly helpful to achieve the long course of leprosy treatment. Through these supports, we can expect community enlightening that may promote rehabilitation of the people once suffered from leprosy.

[Opinions about disease among members of the social network of patients with Hansen's disease in Recife]. / Opiniões sobre a doença entre membros da rede social de pacientes de hanseníase no Recife.

This article describes a study done in Recife, Brazil, between November 1993 and July 1994 to explore the opinions of the members of the social network (for example, family members, friends, and neighbors) of carriers of Hansen's disease regarding their estimation, interpretation, and management of physical manifestations of the disease in the time leading up to diagnosis. The sample consisted of 93 members of the social network, ranging in age between 20 and 70 years, who supported the course of action of 83 patients diagnosed in the study period. The analysis sought to detect differing capacities among the members of the patients' social network to discriminate between persons classified as cases (presence of disabilities or precursor lesions) or controls. The study found a lack of information about transmission of Hansen's disease and revealed a transitional phase in which there was expectation of cure along with a stigmatizing view of the consequences of the disease. Only one-quarter of the study subjects suspected prior to diagnosis that the patient had Hansen's disease, which suggests low perception of the risk represented by the disease and reinforces the idea that its physical manifestations can be invisible. The results reveal a profile of perception and management of Hansen's disease that favors its propagation and the development or worsening of its physical and social consequences.

Longhouse dwelling, social contact and the prevalence of leprosy and tuberculosis among native tribes of Sarawak.

In Sarawak, some tribes stay in communal longhouses whilst others live in villages of single dwellings. The present study looks into the question of whether there is an association between the prevalence of leprosy and tuberculosis with the quantum of social contact that occurs in these two types of settlement patterns. It was found that the prevalence of leprosy and tuberculosis is significantly higher among longhouse dwellers compared with single house dwellers. It was also noted that social groups tended to be larger and to persist for much longer among longhouse dwellers than among those in single dwellings. This lends support to the evidence that social contact in longhouses is more extensive and contributes towards a higher prevalence of leprosy and tuberculosis.