Vision-related quality of life among released from treatment cases of leprosy evaluated with NEI-VFQ-25: a cross-sectional study.

BACKGROUND: People with leprosy who have been declared Release From Treatment (RFT) are often not aware of the leprosy sequelae possibility which can decrease their quality of life. This could be because they have been adapting for a long time hence they do not feel the need to see physicians. This study seeks to compare the results of Vision-Related Quality of Life (VR-QoL) among RFT persons based on the National Eye Institute Visual Functioning Questionnaire-25 (NEI-VFQ-25) and WHO grading disability based on physical examination. METHODS: A cross-sectional study of 325 RFT subjects from leprosy communities (Singkawang, West Kalimantan and Tangerang, Banten) was conducted between 2018 and 2019. We used the NEI-VFQ-25 questionnaire that had been validated and translated into Indonesian and distributed to the leprosy population. Relationships and comparisons among variables were evaluated using Kruskal-Wallis and Mann-Whitney tests. RESULTS: There were three main results: The median composite score of VR-QoL for WHO grade 0, 1, and 2 disabilities has decreased by 13%, 25.5%, and 30% of the maximum value, respectively. Of the total, eleven subscales were statistically significant between WHO grading disability and VR-QoL based on the NEI-VFQ-25 (p < 0.05). The comparison between grade 0 and grade 2 disability in all subscales was statistically significant (p < 0.05). CONCLUSIONS: The grade of disability is related to their VR-QoL assessment using the NEI-VFQ-25 questionnaire. Thus, it can be used as an initial screening in primary healthcare settings to increase awareness of disability before a thorough physical examination.

Mulheres com hanseníase: interferências nos modos de viver / Women with leprosy: interferences in the ways of living

A hanseníase é uma doença milenar que carrega em seus acometidos, em especial nas mulheres, impactos importantes em seu cotidiano, em sua imagem e posição social. Os padrões de gênero socialmente impostos às mulheres vêm acompanhados de preconceitos que tomam novas proporções com a hanseníase, sendo causa de isolamento social, tristeza e depressão, trazendo reformulações nos modos de vida. O questionamento que norteia este trabalho é: Quais as interferências da hanseníase nos modos de viver de mulheres?. O objetivo foi analisar a interferência produzida pela hanseníase nos modos de viver de mulheres. Estudo de abordagem qualitativa, com quadro teórico metodológico com aproximações cartográficas e alguns conceitos da esquizoanálise, proposto por Gilles Deleuze e Félix Guattari. A produção de dados ocorreu por meio de entrevistas individuais e registros no diário de bordo da pesquisadora. Participaram do estudo nove mulheres, com idades entre 30 e 62 anos que no momento da pesquisa estavam em acompanhamento no serviço de saúde para tratamento de hanseníase. Os dados, em sua apresentação, foram baseados nas ideias relativas a diferença e repetição propostas pelos autores supracitados do referencial. Os resultados foram divididos em cinco eixos: 1. Hanseníase e Aparência das Mulheres: Encruzilhada entre a Pele, a Forma e o Feminino; acompanhamos inquietações referentes ao corpo feminino, o corpo alterado pela hanseníase e os efeitos sobre a aparência, que nos mostra que a relação com o corpo é uma construção social de um certo modo de ser mulher, de se apresentar ao outro e de se identificar tal como se espera. 2. Ganhar a Vida: um imperativo entre a Casa e o Trabalho; as participantes trouxeram angústias e preocupações com a remuneração para manutenção da vida. Foi observado também as situações de trabalho formal e informal. 3. Relações Familiares e as Mulheres com Hanseníase; são momentos que elas demonstram suas relações com filhos e marido, e como se dão as relações de poder dentro contexto doméstico. 4. Violência do Estado nas Práticas Profissionais; vimos situações em que o Estado é representado através de práticas profissionais, prejudicando direitos das mulheres. As mulheres relataram a perda de seus empregos, em função da doença, e a busca por auxílio. E por último, 5. Isolamento, Medo, Sofrimento, Fé: Enfrentamento da Hanseníase? as mulheres apresentaram algumas práticas que colocam para reflexão como elas têm enfrentado a hanseníase e a figura feminina isolada em seu próprio lar. Talvez a nossa pretensão fosse encontrar superação, força, potência nessas mulheres frente ao adoecimento. Mas mais que isso, com o referencial metodológico adotado pudemos mapear os encontros e afetos que evidenciaram dores e afetos tristes. A potência para agir se dá nos afetos, incluindo os tristes, não haveria força e potência sem o que as fizessem impulsionar. Apesar disso tudo, a vida dessas mulheres têm passado por reformulações e elas mesmas têm se reinventado a cada dia. Novas formas de viver foram criadas, seja amparada na fé, na família, na cura da hanseníase como marco para novos devires, e até mesmo a busca de força no devir-mulher

Leprosy is an age-old disease that has an important impact on its patients, especially on women, in their daily lives, in their appearance and social position. Gender standards socially imposed on women are accompanied by prejudices that take on new proportions with leprosy, causing social isolation, sadness and depression, imposing changes in the way of life. The objective and question that guides this work is: What are the interferences of leprosy in women's way of life? Thus, a qualitative approach study was made applying cartographic procedure and some concepts of schizoanalysis, proposed by Gilles Deleuze and Félix Guattari. Data production occurred through individual interviews and records in the researcher's logbook. Nine women participated in the study, aged between 30 and 62 years old who, at the time of the research, were being followed up at the health service for the treatment of leprosy. The data, in their presentation, were based on the ideas related to the difference and repetition proposed by the authors mentioned above. The results were divided into five axes: 1. Leprosy and the Appearance of Women: Crossroads between the Skin, the Form and the Feminine; we follow the concerns about the female body, its changes and effects because of the disease. Thus, it became evident that a woman's relationship with her body is a social construction, influencing the ways of presenting to others and comply with social expectations. 2. Earn a living: an imperative between Home and Work; the participants brought anguish and concerns about remuneration for life maintenance. Formal and informal work situations were also observed. 3. Family Relations and Women with Leprosy; moments when they demonstrate affection with their children and husband, and how power relationships take place within the domestic context. 4. State violence in professional practices; we saw situations in which the State is represented through professional practices, undermining women's rights. Women reported losing their jobs due to the disease and seeking help. Finally, 5. Isolation, Fear, Suffering, Faith: Facing Leprosy? Women presented some practices that pose for reflection how they have faced leprosy and the isolated female figure in their own home. Perhaps our intention was to find resilience, strength, power in these women in the face of illness. But more than that, with the methodological framework adopted we were able to map the factors and affections that showed pain and sadness. The power to act occurs in the affections, including the sad ones, there would be no strength and potency without what made them push. Despite all this, the lives of these women have been undergoing reformulation and they have reinvented themselves every day. New ways of living were created, whether supported by faith, family, the cure of leprosy as a framework for new "devires", and even the search for strength in "devir"-woman

Avaliação das limitações físicas, aspectos psicossociais e qualidade de vida de pessoas atingidas pela hanseníase / Evaluation of the physical limitations, psychosocial aspects and quality of life of people affected by leprosy / Evaluación de las limitaciones físicas, aspectos psicosoconales y calidad de vida de personas atencidas por la hanseniasis

Objetivo: Avaliar os aspectos referentes as limitações físicas, psicossociais e qualidade de vida das pessoas atingidas pela hanseníase. Método: Estudo quantitativo, transversal. Foram aplicadas as escalas Screening Activity Limitation and Safety Awareness (SALSA), Participação Social e World Health Organization Quality of Life (WHOQOL-bref) com 31 sujeitos. Resultado: Evidenciou-se que a maioria dos participantes apresentava algum grau de restrição física e social. Correlacionando com o grau de incapacidade, destaca-se que os pacientes que apresentaram restrições também possuíam grau II de incapacidade. Quanto à qualidade de vida, o domínio psicológico e o de relações sociais apresentaram as médias mais altas, enquanto o físico e o ambiental tiveram as mais baixas. Conclusão: Afirma-se a necessidade de priorização e intensificação das ações de prevenção de incapacidades da hanseníase

Objective: Analyze the aspects related to the physical, psychosocial and quality of life of people affected by leprosy. Method: Quantitative, crosssectional study. The Screening Activity Limitation and Safety Awareness (SALSA), Social Participation and e World Health Organization Quality of Life (WHOQOL-bref) scales were applied with 31 subjects. Result: The majority of the participants presented some degree of physical and social restriction. The correlation with the degree of disability highlighted that the patients who presented restrictions also had degree of disability II. About the quality of life, the psychological domain and the social relations showed the highest averages, while the physical and the environmental had the lowest ones. Conclusion: It is necessary to prioritize and intensify actions to prevent disability in leprosy

Objetivo: Evaluar los aspectos referentes a las limitaciones físicas, psicosociales y calidad de vida de las personas afectadas por la lepra. Método: Estudio cuantitativo, transversal. Se aplicaron las escalas Screening Activity Limitation and Safety Awareness (SALSA), Participación Social y World Health Organization Quality of Life (WHOQOL-bref) con 31 sujetos. Resultado: Se evidenció que la mayoría de los participantes presentaba algún grado de restricción física y social. Correlacionando con el grado de incapacidad, se destaca que los pacientes que presentaron restricciones, también poseían grado II de incapacidad. En cuanto a la calidad de vida, el dominio psicológico y el de relaciones sociales presentaron las medias más altas, mientras que el físico y el ambiental tuvieron las más bajas. Conclusión: Se afirma la necesidad de priorización e intensificación de las acciones de prevención de incapacidades de la lepra

Perfil epidemiológico, clínico e qualidade de vida de crianças com hanseníase em um município hiperendêmico / Epidemiological, clinical and quality of life profiling of children with leprosy in a hyperendemic municipality / Perfil epidemiológico, clínico y calidad de vida de niños con hanseniasis en un municipio hiperendémico

Objetivo: analisar o perfil epidemiológico, clinico e qualidade de vida de crianças com hanseníase em um município hiperendêmico. Métodos: estudo descritivo e epidemiológico, com crianças de 5 a 14 anos, notificadas com hanseníase. Dados coletados entre 2015 e 2016, a partir de análise documental (Ficha de Notificação da Hanseníase) e aplicação do Children's Dermatology Life Quality Index (CDLQI). População constituída por 48 crianças, sendo 40 entrevistadas. Análise estatística dos dados com apresentação em frequências absolutas e percentuais e, escores do CDQLI. Projeto aprovado por Comitê de Ética em Pesquisa. Resultados: maiores frequências do sexo masculino, idade entre 12 a 14 anos, cor parda, classificação operacional multibacilar, forma clínica dimorfa e Grau 0 de incapacidade no diagnóstico. Mais da metade com algum grau de comprometimento pelo CDQLI. Conclusão: elevada frequência das formas transmissíveis da doença e do comprometimento da qualidade de vida dos menores de 15 anos investigados.

Objective: to examine the epidemiological, clinical and quality of life profile of children with leprosy in a hyperendemic municipality. Methods: In this descriptive study of children from 5 to 14 years old notified with leprosy, data were collected between 2015 and 2016, by documentary analysis of Leprosy notification records and application of CDLQI. Of the study population of 48 children, 40 were interviewed. Descriptive data analysis results were presented in absolute and percentage frequencies, and CDQLI scores. The project was approved by the research ethics committee. Results: mostly males, aged from 12 to 14 years, brown skin color, multibacillary operational classification, dimorphic clinical form, and disability grade zero at diagnosis more than half with some impairment by CDQLI. Conclusion: transmissible forms of tuberculosis were present in high frequencies, and the quality of life of the under-15s studied was impaired.

Objetivo: analizar el perfil epidemiológico, clínico y calidad de vida de niños con hanseniasis en un municipio hiperendémico. Métodos: estudio descriptivo y epidemiológico, con niños de 5 a 14 años, con notificación de hanseniasis. Datos recolectados entre 2015 y 2016, a partir de análisis documental (Ficha de Notificación de la Hanseniasis) y aplicación del Children's Dermatology Life Quality Index (CDLQI). Población constituida por 48 niños, siendo 40 entrevistados. Análisis estadístico de los datos con presentación en frecuencias absolutas y porcentuales y puntuaciones del CDQLI. Proyecto aprobado por el Comité de Ética en Investigación. Resultados: mayores frecuencias del sexo masculino, edad entre 12 a 14 años, color pardo, clasificación operacional multibacilar, forma clínica dimorfa y Grado 0 de incapacidad en el diagnóstico. Más de la mitad con algún grado de compromiso por el CDQLI. Conclusión: elevada frecuencia de las formas transmisibles de la enfermedad y del compromiso de la calidad de vida de los menores de 15 años investigados.

Limitation of activity and restriction of social participation in relation to age range, gender, and education in people with leprosy.

BACKGROUND: In Brazil, 38,000 new cases of leprosy are discovered each year, making it a public health problem. OBJECTIVE: To identify whether or not there is an association between activity limitations and the restriction of social participation with some demographic data (age range, gender, and education) of the patients in a Basic Health Unit (BHU), diagnosed with leprosy. METHODS: The SALSA scale was used to assess activity limitations, whereas the Participation scale was used to assess the restriction of social participation. RESULTS: The assessments were conducted with 31 BHU patients diagnosed with leprosy. Males were the most affected by leprosy, the multibacillary was the most prevalent, and education proved to be an important factor when related to the disease injuries among the evaluated individuals. Regarding activity limitations and the restriction of social participation, the percentage of individuals without limitations and without restrictions was greater in both scales. STUDY LIMITATIONS: The main limitation is the small study sample. CONCLUSION: It can be concluded that, for the studied sample, no association was observed between the activity limitations, evaluated by the Salsa scale, nor the restriction of social participation, evaluated by the Participation Scale, with the analyzed demographic data.

Limitation of activity and restriction of social participation in relation to age range, gender, and education in people with leprosy

Abstract Background: In Brazil, 38,000 new cases of leprosy are discovered each year, making it a public health problem. Objective: To identify whether or not there is an association between activity limitations and the restriction of social participation with some demographic data (age range, gender, and education) of the patients in a Basic Health Unit (BHU), diagnosed with leprosy. Methods: The SALSA scale was used to assess activity limitations, whereas the Participation scale was used to assess the restriction of social participation. Results: The assessments were conducted with 31 BHU patients diagnosed with leprosy. Males were the most affected by leprosy, the multibacillary was the most prevalent, and education proved to be an important factor when related to the disease injuries among the evaluated individuals. Regarding activity limitations and the restriction of social participation, the percentage of individuals without limitations and without restrictions was greater in both scales. Study limitations: The main limitation is the small study sample. Conclusion: It can be concluded that, for the studied sample, no association was observed between the activity limitations, evaluated by the Salsa scale, nor the restriction of social participation, evaluated by the Participation Scale, with the analyzed demographic data.

El aspecto físico y las repercusiones en la calidad de vida y autonomía de personas mayores afectadas por la lepra / Aspecto físico e as repercussôes na qualidade de vida e autonomia de idosos afetados por hanseníase / Physical appearance and repercussions on the quality of life and the autonomy of elderly people affected by leprosy

La lepra, junto con el envejecimiento trae cambios físicos que afectan a la dependencia y a la autonomía. El objetivo fue evaluar el aspecto físico y el impacto en la calidad de vida y la independencia de las personas mayores afectadas por la lepra. Estudio descriptivo con un enfoque cuantitativo, con 60 ancianos en dos centros de rehabilitación en Sao Luis - MA. Se utilizó el dominio físico de la WHOQOL - bref y Facetas «Habilidades sensoriales» y «Autonomía» del WHOQOL -.OLD, de la Organización Mundial de la Salud. Se observó problemas con el dolor / malestar (31,3%), fatiga (21 3%) y el sueño / descanso (23,3%), actuando en la incapacidad para el transporte (23,3%), la realización de actividades cotidianas (16,6%) y el trabajo (33,3%), así como relacionados con la dependencia de medicamentos / tratamientos (56,6%). La calidad de vida se alteró por la pérdida sensorial (33,3%), así como la capacidad de realizar actividades (28,3%) e interactuar con personas (23,3%). En cuanto a la autonomía, la mayoría de las personas mayores se sintieron libres para tomar decisiones (53,3%) y se sintieron respetadas por tomarlas (55,0%), aunque afirmaron no hacer todo lo que quisieran (38,3 %). Por lo tanto, se concluye que la enfermedad ante el proceso de la senescencia y / o proceso de la senilidad puede haber contribuido negativamente sobre los aspectos físicos y calidad de vida de las personas mayores (AU)

A hanseníase, aliada ao processo de envelhecimento, traz alterações físicas que interferem na dependência e autonomia. O objetivo foi avaliar o aspecto físico e as repercussões na qualidade de vida e autonomia de idosos afetados por hanseníase. Estudo descritivo, de abordagem quantitativa, com 60 idosos em dois Centros de Reabilitação em São Luís - MA. Utilizou-se o Domínio Físico do WHOQOL - bref e as Facetas «Habilidades Sensoriais» e «Autonomia» do WHOQOL - OLD, da Organização Mundial de Saúde. Observou-se problemas com dor/desconforto (31,6%), fadiga (21,6%) e sono/repouso (23,3%), atuando na incapacidade para locomoção (23,3%), realização de atividades diárias (16,6%) e trabalho (33,3%), bem como relacionados à dependência de medicamentos/tratamentos (56,6%). A qualidade de vida foi alterada por perdas sensoriais (33,3%), bem como a capacidade de realizar atividades (28,3%) e interagir com pessoas (23,3%). No que tange a autonomia, a maioria dos idosos se sentia livre para tomar decisões (53,3%) e sentia-se respeitada por tomá-las (55,0%), embora afirmasse não realizar tudo o que deseja (38,3%). Assim, conclui-se que a doença, diante do processo de senescência e/ou senilidade, pode ter contribuído negativamente sobre os aspectos físicos e qualidade de vida dos idosos (AU)

Leprosy, coupled with aging process, brings physical changes, which interfere in dependency and autonomy. The objective was to evaluate the physical aspect and the impact on the quality of life and the autonomy of elderly people affected by leprosy. This is a descriptive study of a quantitative approach, conducted with 60 elderly people in two rehabilitation centers in São Luís (MA). We used the Physical Domain of the WHOQOL-Bref and facets «Sensory Skills» and «Autonomy» of WHOQOL-OLD, from the World Health Organization. There were observed problems with pain/discomfort (31.6 percent), fatigue (21.6%) and sleep/rest (23.3 percent), acting in the inability for locomotion (23.3%), carrying out daily activities (16.6%), and work (33.3 percent), as well as related to the dependency on drugs/treatments (56.6%). The quality of life has changed by loss of sensory (33.3%), as well as the ability to perform activities (28.3%) and interact with people (23.3%). Regarding autonomy, most seniors felt free to make decisions (53.3%) and respected by taking them (55.0%), although stated that do not perform all who desire (38.3%). Thus, it was concluded that the disease, before the process of senescence and/or senility, might have contributed negatively about the physical aspects and quality of life of the elderly (AU)

Avaliação física e funcional de pacientes com hanseníase / Physical and functional evaluation of patients with leprosy / Evaluación física y funcional de los pacientes con lepra

Objetivo: conhecer o grau de funcionalidade de indivíduos acometidos por Hanseníase. Método: estudo descritivo realizado com 30 pacientes, numa cidade do agreste de Pernambuco. Na avaliação física, a força muscular foi mensurada por meio da escala Medical Research Council, enquanto sensibilidade, trofismo e presença de deformidades foram avaliados por meio do Protocolo de Avaliação Física para Pacientes de Hanseníase. A avaliação funcional utilizou a Escala SALSA (Screening Activity Limitation and Safety Awareness) e a Escala de Participação. Os dados foram analisados no programa SPSS 13.0. O projeto foi aprovado pelo Comitê de Ética em Pesquisa, Protocolo nº. 136/10 CEP/ASCES. Resultados: quanto ao grau de incapacidade, 66,7% dos indivíduos acometidos apresentaram grau 1; em relação à participação, 70% se mostraram sem restrição significativa, e 43,3% dos avaliados não apresentavam limitações nas atividades diárias. Conclusão: os indivíduos avaliados não apresentam grande limitação física e funcional.(AU)

Objective: recognizing the degree of functionality of individuals affected by Leprosy. Method: a descriptive study conducted with 30 patients in a countryside city of Pernambuco. About physical evaluation, muscle strength was measured using the Medical Research Council Scale, while sensitivity, trophism and the presence of deformities were evaluated by the Physical Evaluation Protocol for Leprosy Patients. Functional evaluation used the SALSA Scale (Screening Activity Limitation and Safety Awareness) and the Participation Scale. Data were analyzed using SPSS 13.0 software. The project was approved by the Research Ethics Committee, Protocol nº. 136/10 CEP/ASCES. Results: regarding the degree of disability, 66,7% of affected individuals had grade 1; regarding the participation, 70% have shown no significant restriction, and 43,3% of the individuals did not show limitations in daily activities. Conclusion: the assessed individuals have no great physical and functional limitation.(AU)

Objetivo: conocer el grado de funcionalidad de las personas afectadas por la lepra. Método: este es un estudio descriptivo con 30 pacientes en una ciudad del interior de Pernambuco. En el examen físico, la fuerza muscular se midió mediante la escala del Medical Research Council, mientras sensibilidad, trofismo y presencia de deformidades fueron evaluados por el Protocolo de Evaluación Física para los Enfermos de Lepra. La valoración funcional utiliza la Escala SALSA (Limitación de la Actividad de Investigación y Conocimiento de la Seguridad) y la Escala de Participación. Los datos fueron analizados utilizando el software SPSS 13.0. El proyecto fue aprobado por el Comité de Ética en la Investigación, Protocolo nº. 136/10 CEP/ASCES. Resultados: el grado de discapacidad, el 66,7% de los individuos afectados tenían grado 1; sobre la participación, el 70% ha mostrado ninguna restricción significativa, y el 43,3% de los individuos no tienen limitaciones en las actividades diarias. Conclusión: las personas señaladas no tienen gran limitación física y funcional.(AU)

Vitiligo impact scale: an instrument to assess the psychosocial burden of vitiligo.

BACKGROUND: Vitiligo is a disease that significantly impairs quality of life. Previous studies have shown that vitiligo has an impact that may not correlate with the size and extent of depigmentation, indicating a need for an independent measure of the psychosocial burden. AIMS: To develop a rating scale to assess the psychosocial impact of vitiligo. METHODS: The study was undertaken in three broad phases: item generation, pre- and pilot testing, and test administration. Items were generated largely from a qualitative study using semi-structured interviews of patients. Face and content validity were assessed through pre- and pilot testing in 80 patients and the final version was administered to 100 patients who also received the Dermatology Life Quality Index (DLQI) and the Skindex-16. Each patient also underwent a physician global assessment (PGA) of the impact of vitiligo. Test-retest reliability was assessed in 20 patients. RESULTS: Of 72 items initially generated for the scale, 27 were retained in the final version. Subjects were able to comprehend the items and took about 5-7 min to complete the instrument. The scale was internally consistent (Cronbach's α = 0.85). Scores on the scale correlated moderately well with the DLQI and the Skindex (Spearman rank correlation: 0.51 and 0.65, respectively). The scale was able to discriminate between patients having mild and those having moderate and severe impact as assessed by PGA. The test-retest reliability coefficient (Spearman rank correlation) was 0.80. CONCLUSION: The Vitiligo Impact Scale appears to be a valid measure of the psychosocial impact of vitiligo and this instrument may be useful both in the clinic and in clinical trials.

Percepções da doença e do tratamento pelos pacientes tratados de hanseníase residentes em Palmas-Tocantins / Perceptions of disease and therapy of patients treated for leprosy living in Palmas, Tocantins

O objetivo deste trabalho é conhecer a vivência dos sujeitos que passam pela experiência do tratamento de hanseníase na cidade de Palmas-Tocantins. Para tanto, utilizou-se um método de pesquisa de abordagem qualitativa. A coleta de dados foi realizada mediante roteiro semi-estruturado que continha a questão: “Gostaria de fazer algum comentário sobre a doença e o tratamento?” nos anos de 2011 e 2012. Participaram desse estudo 57 entrevistados que relataram sobre suas dores frente à doença e mudanças dos hábitos de vida. Comentaram ainda sobre os efeitos adversos dos medicamentos utilizados no tratamento, o desconhecimento da doença, a falta de apoio dos profissionais da saúde após o término do tratamento e o preconceito e vergonha que passaram. A partir da hanseníase entende-se a importância da dimensão psicossocial para o enfrentamento da doença, o sucesso do tratamento e das complicações implicadas. No trabalho descrito, percebem-se diferentes experiências e percepções dos pacientes que apontam o temor, a dúvida e a dor como constantes em seus tratamentos e depois deles.

The objective of this work was to report on the experience of individuals treated for leprosy in the city of Palmas, Tocantins. For this, a qualitative research was proposed. In 2011 and 2012, data was collected usinga semi-structured text that contained the question: “Would you like to make a comment about the disease and treatment?” This study includes the perceptions of 57 individuals who responded by reporting on their pain while coping with the disease and their changes in life style. They also commented on the adverse effects of the medications they took during treatment, the ignorance of the disease, the lack of support from health professionals after the end of treatment and the discrimination and shame that they experienced. Having leprosy shows the importance of the psychosocial dimension of coping with the disease, the success of treatment and the complications involved. This work demonstrates the different experiences and perceptions of patients, their fears, doubts and pain as constants during treatment and persisting after wards.

The impact of leprosy on health-related quality of life.

INTRODUCTION: Leprosy is a potentially disabling infectious disease that evolves into emotional issues due to the prejudice that persists about the illness. The endemic has declined substantially with multidrug therapy (MDT) in the 80's; however, new demands associated with the reduction of stigma and the improvement of the affected people's quality of life have emerged. In Brazil, leprosy is still a public health problem. Piauí is the second state in the Northeast in prevalence and detection, and Teresina is a hyperendemic city. This study aimed to analyze the health-related quality of life (HRQoL) of people in treatment for leprosy in Teresina/PI. METHODS: An observational study was conducted using the SF-36 (a specific questionnaire for assessing quality of life), which sought the determinants of poor quality of life among people with leprosy, outlining the sociodemographic, clinical, and epidemiological characteristics of the 107 patients interviewed. RESULTS: The correlations between the variables showed five determinants of HRQoL: late diagnosis, multibacillary forms, reactions, disability diagnosis grade II, and prejudice. The profile of the participants showed that leprosy still affects the lower social classes in historically endemic areas, causing high percentages of secondary injuries that compromise the work capacity and quality of life of the affected people, perpetuating the stigma associated with the disease. CONCLUSIONS: The study reinforces the need to implement more effective strategies of disease control, due to the development of severe and disabling forms of leprosy is directly related to poor HRQoL in the same cured patient.

The impact of leprosy on health-related quality of life / O impacto da hanseníase na qualidade de vida relacionada à saúde

INTRODUCTION: Leprosy is a potentially disabling infectious disease that evolves into emotional issues due to the prejudice that persists about the illness. The endemic has declined substantially with multidrug therapy (MDT) in the 80's; however, new demands associated with the reduction of stigma and the improvement of the affected people's quality of life have emerged. In Brazil, leprosy is still a public health problem. Piauí is the second state in the Northeast in prevalence and detection, and Teresina is a hyperendemic city. This study aimed to analyze the health-related quality of life (HRQoL) of people in treatment for leprosy in Teresina/PI. METHODS: An observational study was conducted using the SF-36 (a specific questionnaire for assessing quality of life), which sought the determinants of poor quality of life among people with leprosy, outlining the sociodemographic, clinical, and epidemiological characteristics of the 107 patients interviewed. RESULTS: The correlations between the variables showed five determinants of HRQoL: late diagnosis, multibacillary forms, reactions, disability diagnosis grade II, and prejudice. The profile of the participants showed that leprosy still affects the lower social classes in historically endemic areas, causing high percentages of secondary injuries that compromise the work capacity and quality of life of the affected people, perpetuating the stigma associated with the disease. CONCLUSIONS: The study reinforces the need to implement more effective strategies of disease control, due to the development of severe and disabling forms of leprosy is directly related to poor HRQoL in the same cured patient.

INTRODUÇÃO: A hanseníase é uma doença infecto-contagiosa, potencialmente incapacitante, que evolui com elevada carga emocional em função do preconceito que persiste sobre os acometidos. A endemia declinou substancialmente com a poliquimioterapia (PQT), na década de 80; entretanto, surgiram novas demandas associadas à redução do estigma e melhoria da qualidade de vida dos acometidos. No Brasil, a hanseníase ainda é um problema de saúde pública. O Piauí é o 2º estado do nordeste em prevalência e detecção, sendo que Teresina é hiperendêmica. Objetivou-se analisar a qualidade de vida relacionada à saúde (QVRS) de pessoas em tratamento da hanseníase em Teresina/PI. MÉTODOS: Estudo observacional realizado com a aplicação do SF-36 (questionário específico para avaliação da qualidade de vida) que buscou os determinantes da piora na qualidade de vida das pessoas com hanseníase, delineando o perfil sóciodemográfico, clínico e epidemiológico dos 107 pacientes entrevistados. RESULTADOS: A correlação entre as variáveis demonstrou cinco determinantes para QVRS: diagnóstico tardio, formas multibacilares, reações, grau II de incapacidade no diagnóstico e preconceito. O perfil dos participantes revelou que a hanseníase continua acometendo as classes sociais menos favorecidas em áreas historicamente endêmicas provocando percentuais elevados de lesões secundárias que comprometem a capacidade de trabalho e a qualidade de vida dos acometidos, perpetuando o estigma associado à doença. CONCLUSÕES: O estudo reforça a necessidade de implementação de estratégias mais efetivas de controle da doença, uma vez que o estabelecimento de formas graves e incapacitantes de hanseníase está diretamente relacionada à baixa QVRS mesmo no paciente curado.

Evaluation of activity limitation and social participation, and the effects of reconstructive surgery in people with disability due to leprosy: a prospective cohort study.

PURPOSE: To assess how activity limitation and social participation of individuals with leprosy-related disability change over time, and to quantify the effect of reconstructive surgery. METHOD: Individuals with disability due to leprosy who accepted invitations for assessment at a leprosy clinic between March and July 2007 were interviewed using the SALSA Scale (measuring activity limitation) and the Participation Scale (assessing social participation). All participants were offered reconstructive surgery. Follow-up interviews were done 1 year after the first interview or 1 year after surgery. The main outcomes were changes in SALSA score and Participation score. We used analysis of variance to identify the effects of independent factors on mean SALSA and Participation scores. RESULTS: We interviewed 222 participants, 15 of whom took up the offer of surgery and 207 who did not. Comparison of SALSA Scale scores at baseline and 1 year revealed that activity limitation did not significantly change over time in individuals who declined surgery; however, participants who had surgery showed a significant improvement at 1 year (p < 0.001). Social participation improved over time in both groups, but the difference was significant only in the non-surgery group (p < 0.001). CONCLUSIONS: The findings suggest that reconstructive surgery has beneficial effects on functioning. Evaluation of the need for, and effect of, surgery in larger studies is recommended.

Measuring leprosy-related stigma - a pilot study to validate a toolkit of instruments.

PURPOSE: Stigma negatively affects the quality of life of leprosy-affected people. Instruments are needed to assess levels of stigma and to monitor and evaluate stigma reduction interventions. We conducted a validation study of such instruments in Tamil Nadu and West Bengal, India. METHODS: Four instruments were tested in a 'Community Based Rehabilitation' (CBR) setting, the Participation Scale, Internalised Scale of Mental Illness (ISMI) adapted for leprosy-affected persons, Explanatory Model Interview Catalogue (EMIC) for leprosy-affected and non-affected persons and the General Self-Efficacy (GSE) Scale. We evaluated the following components of validity, construct validity, internal consistency, test-retest reproducibility and reliability to distinguish between groups. Construct validity was tested by correlating instrument scores and by triangulating quantitative and qualitative findings. Reliability was evaluated by comparing levels of stigma among people affected by leprosy and community controls, and among affected people living in CBR project areas and those in non-CBR areas. RESULTS: For the Participation, ISMI and EMIC scores significant differences were observed between those affected by leprosy and those not affected (p = 0.0001), and between affected persons in the CBR and Control group (p < 0.05). The internal consistency of the instruments measured with Cronbach's α ranged from 0.83 to 0.96 and was very good for all instruments. Test-retest reproducibility coefficients were 0.80 for the Participation score, 0.70 for the EMIC score, 0.62 for the ISMI score and 0.50 for the GSE score. CONCLUSION: The construct validity of all instruments was confirmed. The Participation and EMIC Scales met all validity criteria, but test-retest reproducibility of the ISMI and GSE Scales needs further evaluation with a shorter test-retest interval and longer training and additional adaptations for the latter.

Avaliação da qualidade de vida de pacientes tratados e em tratamento para Hanseníase: uso do Dermatology Life Quality Index e do Whoqol-bref / Evaluation of the quality of life of patients and treatment for Leprosy: use of Dermatology Life Quality Index and Whoqol-bref-

Qualidade de vida (QV) é um assunto que vem despertando o interesse de pesquisadores e profissionais, principalmente, das áreas biológicas e humanas. Informações sobre QV têm sido utilizadas para avaliar a eficácia de determinados tratamentos, agravos à saúde e impacto físico e psicossocial. A hanseníase, foco do estudo em questão, é uma doença crônica, que pode interferir em aspectos importantes da vida do indivíduo. Trata-se de um estudo transversal e descritivo que analisou a QV de 90 pacientes com hanseníase que estavam em acompanhamento nos três serviços de referência em hanseníase da Diretoria Regional de Saúde VI de Bauru/SP. Utilizou-se como instrumentos para a coleta dos dados três protocolos: a ficha de caracterização sóciodemográfica dos pacientes, os questionários de qualidade de vida WHOQOL-bref e DLQI. Identificou-se que o sexo masculino apresentou-se mais freqüente que o feminino, tanto nos pacientes tratados quanto nos em tratamento, totalizando 59 (65,5%) dos 90 pacientes. A maior parte dos pacientes apresentou idade entre 40-59 anos (53/90, 59%) e 65 (72,2%) tinham até o primeiro grau de escolaridade, 43 (47,8%) encontravamse ativos e 47 (52,2%) inativos, 76(84,4%) recebiam de um a dois salários mínimos. Além de serem portadores da hanseníase, referiram ter outras morbidades, sendo mais freqüentes as doenças crônicas como Diabetes mellitus e Hipertensão Arterial Sistêmica. A grande maioria (77/90, 85,5%) era multibacilar, 74 (82,2%) dos entrevistados tinham grau 0 de incapacidade...

Quality of life (QOL) is a subject that has aroused the interest of researchers and practitioners, mainly from the biological and human areas. Information on QOL have been used to evaluate the effectiveness of certain treatments, health problems and physical and psychosocial impact. Leprosy is a chronic disease, which can interfere with important aspects of functioning. This is a descriptive cross-sectional study that evaluated the QOL of 90 patients with leprosy who were in attendance at the three reference services in leprosy in the Regional Health Board VI of Bauru. We used as instruments for data collection three protocols: the sociodemographic characteristics protocol, the quality of life questionnaire WHOQOL-bref and DLQI. It was identified that male sex was more frequent than females, both in patients treated as well as in those undergoing treatment, encompassing 59 (65.5%) out 90 patients. Most patients presented with ages between 40-59 years old (53/90, 59%) and 65 (72.2%) had completed elementary education, 43 (47.8%) were active and 47 (52,2%) inactive, 76 (84.4%) received one to two minimum wages. In addition to the diagnosis of leprosy, patients reported having other comorbidities, the most frequent chronic diseases were diabetes mellitus and Hypertension. The vast majority (77/90, 85.5%) were multibacillary, 74 (82.2%) respondents had grade 0 disability...

Análise da qualidade de vida em pacientes com incapacidades funcionais decorrentes de hanseníase / Analysis of the quality of life in patients with disabilities caused of hansen’s disease

A hanseníase é uma doença infecciosa, causada pelo Mycobacterium leprae, micro-organismo que acomete principalmente a pele e os nervos. É considerada no Brasil como um problema de saúde pública, por causar incapacidades e deformidades que podem levar a alterações da qualidade de vida. Objetivou-se, neste trabalho, analisar a qualidade geral da vida dos indivíduos com hanseníase. Foi realizado um estudo transversal com 100 pacientes submetidos a tratamento no Centro de Referência Dona Libânia, independente do sexo e com idade superior a 18 anos. Foram aplicados 02 questionários: qualidade de vida SF-36 e outro abordando aspectos epidemiológicos, socioeconômicos e característica da doença. Os resultados mostraram que a metade era do sexo masculino (n=54). A média de idade de 39,2 ± 12,57, com maior prevalência entre 26 a 45 anos (n=44). Dos entrevistados, 51 tinham o primeiro grau incompleto e 91 apresentavam renda familiar de 1 a 3 salários mínimos. Na qualidade de vida, os domínios que apresentaram valores baixos foram limitação por aspecto físico, dor e aspecto emocional, quando comparado aos demais (p<0,05). Ao classificar a média dos domínios, a capacidade funcional, aspecto social e saúde mental foram enquadrados como “muito bom”. Entretanto, limitação por aspecto físico, dor, estado geral de saúde, vitalidade e aspecto emocional obtiveram perfil “bom”. Pode-se concluir que a hanseníase interfere na qualidade de vida dos pacientes, por ser uma patologia que gera incapacidades funcionais, acarretando a diminuição da atividade laboral e restrição da vida social.

Leprosy is an infectious disease caused by Mycobacterium leprae, micro-organism that primarily affects the skin and nerves. It is considered in Brazil as a public health problem, causing disabilities and deformities that can lead to changes in quality of life. The objective of this study was to analyze the overall quality of life of people with leprosy. A cross-sectional study of 100 patients undergoing treatment in a Reference Center, regardless of sex and age over 18 years was conducted. 02 questionnaires were applied: SF-36 quality of life and addressing other epidemiological, socioeconomic and characteristic of the disease. The results showed that half were male (n = 54). The mean age was 39.2 ± 12.57, with higher prevalence among 26-45 years (n = 44). Of those interviewed, 51 had incomplete first degree and 91 had a family income 1-3 times the minimum wage. Quality of life, areas that had low values ​​were limited by physical aspect, pain and emotional aspect when compared to the others (p <0.05). By classifying the average of the areas, functional capacity, social aspects and mental health they were classified as "very good". However, limited by the physical aspect, pain, general health, vitality and emotional aspect obtained Profile "good." It can be concluded that leprosy interfere with the quality of life of patients to be a condition which generates functional disability, leading to reduction in working activity and restriction of social life.

Impacts of the diagnosis of leprosy and of visible impairments amongst people affected by leprosy in Cebu, the Philippines.

PURPOSE: To quantify the impact of the diagnosis of leprosy and of visible impairments in people affected by leprosy. SUBJECTS AND METHODS: Three interview-based questionnaires designed to measure activity limitation, participation restriction, and general self-efficacy were used to collect data from three Groups. Group 1: leprosy affected people with visible impairment, Group 2: newly diagnosed leprosy patients with no visible impairment, Group 3: patients with other skin diseases symptomatic for more than 1 month. RESULTS: One hundred and eight subjects were recruited. The subjects with visible impairments (Group 1) had higher levels of participation restriction than those with skin disease (P0.012), and participation restriction was similar between subjects in Groups 2 and 3 (P0-305). The people in Group 1 (35 subjects) also reported significantly more activity limitation compared to the people in either Group 2 (35 subjects) or Group 3 (38 subjects) (P 0-001, respectively). The subjects in Group 2 had no significant activity limitation compared with those in Group 3 (P0.338). A multivariate analysis showed that severe visible impairment was a risk factor for activity limitation (odds ratio 5.68, 95% CI: 1.09-297, P0.039) and a low level of self-efficacy (Odds ratio 6.38, 95% CI: 1.06-38.3, P0-043) among people affected by leprosy. CONCLUSION: Visible impairments affected the activities and attitudes of people affected by leprosy. However, others without visible impairment, had activity limitations, participation restrictions and levels of general self-efficacy that were similar to patients with other skin diseases. Prevention of visible impairments should be considered a key intervention for stigma reduction.

Perceived social restriction in leprosy-affected inhabitants of a former leprosy colony in northeast Brazil.

INTRODUCTION: In Brazil, isolation of individuals affected with leprosy was compulsory by law from 1920 to 1962, but in reality, confinement of patients to leprosaria continued until the 1980s. The social participation restriction of people still living in these institutions has never been investigated systematically. STUDY AIM: To examine the extent and type of participation restriction perceived by former leprosy patients living in the Centro de Convivência Antônio Diogo (CCAD), a previous leprosy colony in rural Northeast Brazil, by using the Participation Scale. RESULTS: Forty (51-9%) out of 77 individuals reported significant participation restrictions, mainly related to work and mobility. Perceived participation restriction was significantly higher in people living in nursing units of the CCAD (P = 0-001), if diagnosis of leprosy was made before 1982 (P = 0.002), in the presence of walking limitation (P < 0.001) and visible physical alterations (P = 0-002), such as foot deformities (P = 0.002), saddle nose (P = 0.03) and blindness (P = 0.04), and in those individuals who did not receive visitors (P = 0.004). CONCLUSION: Social rehabilitation, especially in the areas of work and mobility, is strongly needed together with prevention of debilitating physical sequelae and reduction of stigmatisation.

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.

Approaches and tools for measuring disability in low and middle-income countries.

PURPOSE: To review the current state-of-the-art of measuring disability in the context of countries where leprosy is endemic. BACKGROUND: Estimates of the prevalence of disability are often based on scanty data, collected with a myriad of different instruments. This is true for all four components of the International Classification of Functioning, Disability and Health (ICF); 1) body functions and structures, 2) activities and participation, 3) personal factors and 4) environmental factors, and for disability-related quality of life. There is an urgent need for data on leprosy-related disability, as well as for data on disability due to other causes. Data is needed as baseline for rehabilitation programmes, individual interventions, for programme monitoring and evaluation and for advocacy. RESULTS: Measurement instruments and qualitative data collection techniques now exist which are directly applicable in the context of most leprosy-endemic countries. We discuss several instruments compatible with the ICF conceptual framework. A validated generic instrument for measuring impairment is currently not available. For measuring activity and participation, we recommend the WHODAS, the SALSA scale and the Participation Scale. We recommend an inclusive focus, where people with leprosy-related disability are seen as a sub-group of people with disability in the wider context, since many of their needs are the same as those of others. The need for validation and collection of normative reference data is also discussed. CONCLUSIONS: Programmes and research projects should choose an appropriate set of tools and methods and seek to apply these systematically. This choice should be guided by data on the validity of these tools in the concerned context. Instruments should be revalidated formally in every new context. Similarly, locally relevant normative data should be collected and applied to ensure that decisions are based on valid interpretations and conclusions.