Spatial-temporal trends in leprosy burden and its associations with socioeconomic and physical geographic factors: results from the Global Burden of Disease Study 2019.

OBJECTIVES: The purpose of our study was to assess the multiscalar changes in leprosy burden and its associated risk factors over the last three decades. STUDY DESIGN: We conducted an in-depth examination of leprosy's spatial-temporal trends at multiple geographical scale (global, regional, and national), utilizing information from Global Burden of Disease, Injuries, and Risk Factors Study (GBD 2019). METHODS: Incidence and the estimated annual percentage change (EAPC) in age-standardized incidence rate (ASIR) of leprosy were determined, with countries categorized based on leprosy incidence changes. We examined socioeconomic and physical geography influences on leprosy incidence via Spearman correlation analysis, using ternary phase diagrams to reveal the synergetic effects on leprosy occurrence. RESULTS: Globally, incident cases of leprosy decreased by 27.86% from 1990 to 2019, with a reduction in ASIR (EAPC = -2.53), yet trends were not homogeneous across regions. ASIR and EAPC correlated positively with sociodemographic index (SDI), and an ASIR growth appeared in high SDI region (EAPC = 3.07). Leprosy burden was chiefly distributed in Tropical Latin America, Oceania, Central Sub-Saharan Africa, and South Asia. Negative correlations were detected between the incidence of leprosy and factors of SDI, GDP per capita, urban population to total population, and precipitation, whereas the number of refugee population, temperature, and elevation showed opposite positive results. CONCLUSIONS: Despite a global decline in leprosy over the past three decades, the disparities of disease occurrence at regional and national scales still persisted. Socioeconomic and physical geographic factors posed an obvious influence on the transmission risk of leprosy. The persistence and regional fluctuations of leprosy incidence necessitate the ongoing dynamic and multilayered control strategies worldwide in combating this ancient disease.

Leprosy in Colombia: A look from life experience.

Leprosy continues to be stigmatized, causing harm to fundamental rights, pain and hopelessness in those who have suffered from it and their families. From its relationship with public and mental health, effective strategies must be implemented to reduce stigma and unlearn myths and wrong perceptions, support families, and improve quality of life through early care and detection. This article shows that those affected by leprosy are capable, functional people with much to contribute to society anywhere in the world.

Experiences of social stigma of people living with Hansen's disease in Brazil: silencing, secrets and exclusion.

BACKGROUND: Hansen's disease is a chronic, infectious and transmissible disease that is considered a public health problem in Brazil. Hansen's disease is marked by stigma and prejudice, because it carries with it a strong negative social image, reinforced by policies of social isolation in the community. METHODS: A qualitative study was conducted in Ribeirão Preto, an inland city of the state of São Paulo, Brazil. Eleven patients under treatment for the disease were interviewed. The interviews were audio recorded and transcribed in full, then were analyzed through the stages of transcription, transposition and reconstitution, as informed by concepts proposed by Goffman. RESULTS: The results showed that the marks of stigma are still present in the twenty-first century and were presented in two axes: 'Stigma and work for the person affected by Hansen's disease' and 'The experience of stigma in the family'. The participants refer to fears of losing their jobs and of being ridiculed, which stops them talking about the disease. Regarding their families, the participants reported episodes of discrimination, the creation of family secrets and fear of relatives' reactions. CONCLUSIONS: All these aspects interfere in the follow-up and treatment of patients and need to be considered and welcomed by health professionals. It is recommended that these aspects are addressed in the initial training and continuing education of health professionals. CONTEXTE: La maladie de Hansen est une maladie chronique, infectieuse et transmissible, considérée comme un problème de santé publique au Brésil. La maladie de Hansen est marquée par la stigmatisation et les préjugés, car elle véhicule une image sociale fortement négative, renforcée par des politiques d'isolement social au sein de la communauté. MÉTHODES: Étude qualitative menée à Ribeirão Preto, une ville intérieure de l'État de São Paulo, au Brésil. Onze patients traités pour la maladie ont été interrogés. Les entretiens ont été enregistrés et transcrits intégralement, et ont été analysés en suivant les étapes de transcription, de transposition et de reconstitution, selon les concepts proposés par Goffman. RÉSULTATS: Les résultats montrent que les marques de la stigmatisation sont toujours présentes au 21ème siècle et ont été présentées selon deux axes : 'La stigmatisation et le travail pour la personne affectée par la maladie de Hansen' et 'L'expérience de la stigmatisation dans la famille'. Les participants évoquent la peur de perdre leur emploi, la peur d'être ridiculisés, ce qui les pousse à ne pas parler de la maladie. En ce qui concerne les familles, les participants ont rapporté des épisodes de discrimination, la création de secrets de famille et la peur des réactions des proches. CONCLUSIONS: Tous ces aspects interfèrent dans le suivi et le traitement des patients et doivent être pris en compte et accueillis par les professionnels de la santé. Il est recommandé que ces aspects soient abordés dans la formation initiale et la formation continue des professionnels de la santé. ANTECEDENTES: La enfermedad de Hansen es una enfermedad crónica, infecciosa y transmisible, considerada un problema de salud pública en Brasil. La enfermedad de Hansen está marcada por el estigma y el prejuicio, ya que conlleva una fuerte imagen social negativa, reforzada por políticas de aislamiento social en la comunidad. MÉTODOS: Estudio cualitativo realizado en Ribeirão Preto, una ciudad del interior del estado de São Paulo, Brasil. Se entrevistaron a once pacientes en tratamiento para la enfermedad. Las entrevistas fueron grabadas en audio, transcritas en su totalidad y analizadas a través de etapas de transcripción, transposición y reconstitución, según los conceptos propuestos por Goffman. RESULTADOS: Los resultados muestran que las marcas del estigma siguen presentes en el siglo XXI y se presentaron en dos ejes: 'Estigma y trabajo para la persona afectada por la enfermedad de Hansen' y 'La experiencia del estigma en la familia'. Los participantes mencionan el miedo a perder sus trabajos, el temor a ser ridiculizados, lo que les impide comentar sobre la enfermedad. En cuanto a las familias, los participantes reportaron episodios de discriminación, la creación de secretos familiares y el miedo a las reacciones de los familiares. CONCLUSIONES: Todos estos aspectos interfieren en el seguimiento y tratamiento de los pacientes y deben ser considerados y acogidos por los profesionales sanitarios. Se recomienda abordar estos aspectos en la formación inicial y la educación continua de los profesionales sanitarios.

Clofazimine-induced cutaneous hyperpigmentation as a source of stigma in the treatment of leprosy: A cross-sectional study.

OBJECTIVES: Cutaneous hyperpigmentation is one of the main adverse effects encountered in patients undergoing leprosy treatment with multidrug therapy (WHO-MDT). This adverse effect has been described as intolerable and capable of contributing to social stigma. The objectives of this study were to quantify the variation in skin colour induced by clofazimine during and after treatment and to assess the related stigma. METHODS: This observational cross-sectional study objectively measured skin colour in 51 patients by reading the individual typology angle (ITA°) with a spectrophotometer, followed by the application of the Stigma Scale of the Explanatory Model Interview Catalogue (EMIC). RESULTS: Skin hyperpigmentation was observed in 100% of the individuals. They showed more negative ITA° values in lesion areas than non-lesion areas, particularly in sun-exposed regions. Clofazimine-induced cutaneous hyperpigmentation was not homogeneous and seemed to follow the lesion locations. The mean EMIC score was 18.8 points. CONCLUSION: All patients presented skin hyperpigmentation caused by clofazimine, detectable through spectrophotometry. Hyperpigmentation strongly impacted the social domain, indicating the intersectionality of disease and skin colour stigma, contributing to the social isolation of these patients. Health authorities should consider the negative impact of clofazimine on treatment adherence.

Public perceptions of genomic studies and hereditary diseases in Aari community, South Omo Zone, Ethiopia.

BACKGROUND: Genetic and genomic research is revolutionizing precision medicine; however, addressing ethical and cultural aspects is crucial to ensure ethical conduct and respect for community values and beliefs. This study explored the beliefs, perceptions and concerns of the Aari community in South Ethiopia regarding genetic concepts, hereditary diseases and ethical research practices related to sample collection, storage and sharing. METHODS: In-depth interviews and focus group discussions were conducted with community elders, health officials, tuberculosis patients and apparently healthy individuals. Data were thematically analysed using MAXQDA software. RESULTS: Participants identified diseases such as podoconiosis, leprosy, goitre and epilepsy as hereditary and perceived some as 'curses' due to generational impact and social stigma. Disease susceptibility was attributed to divine intervention or factors such as malnutrition and sanitation. Although hereditary diseases were considered unavoidable, in some cases environmental factors were acknowledged. Participants shared personal examples to demonstrate inheritance concepts. Blood held cultural significance, and concerns about its potential misuse resulted in scepticism towards giving samples. CONCLUSIONS: This study emphasizes the significance of comprehending local beliefs and perceptions and stresses the need to establish effective communication, build trust and address underlying causes of hesitancy to improve recruitment and ensure ethical conduct.

[Hansen's Disease: An Unusual Manifestation of an Ancient Disease]. / Doença de Hansen: Apresentação Incomum de uma Doença Antiga.

Hansen's disease, commonly known as leprosy, is an infectious disease caused by Mycobacterium leprae. Being rare in developed countries, it is an increasingly common imported disease due to the migratory flow from countries where it is endemic. We present the case of a 21-year-old man who went to the emergency department with complaints of additive polyarthralgia involving large joints, papules, and erythematous plaques on the limbs with bullae and central necrosis and fever with chills for one week. Skin biopsy was performed revealing neutrophilic infiltrate with perineural granulomas. The bacilloscopy detected acid-alcohol resistant bacilli. The diagnosis of multibacillary HD with type 2 lepromatous reaction (erythema nodosum leprosum - ENL) was established, showing clinical improvement under corticosteroid therapy. ENL usually presents with painful lesions, being an atypical presentation of leprosy, especially in the presence of bullae and necrosis, making diagnosis difficult and challenging. Social stigma is often present making it difficult to accept the disease as well as adherence to treatment.

A doença de Hansen, vulgarmente conhecida como lepra, é uma doença infecciosa causada por Mycobacterium leprae. Sendo rara nos países desenvolvidos, configura uma doença de importação cada vez mais frequente considerando o fluxo migratório de países onde é endémica. Apresentamos o caso de um homem de 21 anos que recorreu ao serviço de urgência por poliartralgias de caráter aditivo envolvendo grandes articulações, pápulas e placas eritematosas nos membros com bolhas e necrose central e febre com calafrio com uma semana de evolução. Foi realizada biópsia cutânea que revelou infiltrado neutrofílico com granulomas de distribuição perineural e baciloscopia com deteção de bacilos ácido-álcool resistentes. Foi estabelecido o diagnóstico de DH multibacilar com reação lepromatosa tipo 2 (eritema nodoso leproso), apresentando melhoria clínica sob corticoterapia. O eritema nodoso leproso cursa habitualmente com lesões dolorosas, configurando uma apresentação atípica de lepra, sobretudo na presença de bolhas e necrose, tornando este diagnóstico altamente desafiante. O estigma social é frequentemente limitativo na aceitação da doença e adesão ao tratamento.

Hanseníase e COVID-19: repercussões na vida de pessoas afetadas e promoção de intervenções / Leprosy and COVID-19: repercussions on the lives of affected people and promotion of interventions / Lepra y COVID-19: repercusiones en la vida de las personas afectadas y promoción de intervenciones

Objetivo: analisar as repercussões da COVID-19 na vida das pessoas afetadas pela hanseníase e promover intervenções de enfrentamento aos problemas vivenciados pelos usuários. Método: estudo qualitativo do tipo pesquisa participante, realizado de dezembro de 2021 a junho de 2022 na região metropolitana de Recife em oito serviços de saúde de referência para hanseníase. Realizaram-se entrevistas semiestruturadas, telemonitoramento e intervenções nos grupos de autocuidado com usuários acometidos pela hanseníase, e oficinas com profissionais e gestores. Resultados: observaram-se repercussões financeiras, no acesso aos serviços de saúde e na socialização dos usuários. As intervenções realizadas com usuários promoveram melhores práticas de conhecimento sobre a patologia, empoderamento e autocuidado. As oficinas com gestores e profissionais propiciaram a retomada e implementação de novos grupos de autocuidado, atividades comprometida na pandemia. Conclusão: a COVID-19 trouxe repercussões na situação financeira, socialização e acesso a serviços de saúde, com piora da situação de vulnerabilidade social e isolamento, já presentes no contexto da hanseníase.

Objective: to analyze the repercussions of COVID-19 on the lives of people affected by leprosy and to promote interventions to cope with the problems experienced by users. Method: qualitative study of the participant research type, carried out from December 2021 to June 2022 in the metropolitan region of Recife in eight reference health services for leprosy. Semi-structured interviews, telemonitoring and interventions were carried out in self-care groups with users affected by leprosy, and workshops with professionals and managers. Results: there were financial repercussions, on access to health services and on the socialization of users. Interventions carried out with users promoted better knowledge practices about the pathology, empowerment and self-care. The workshops with managers and professionals facilitated the resumption and implementation of new self-care groups, activities compromised in the pandemic period. Conclusion: COVID-19 had repercussions on the financial situation, socialization and access to health services, with a worsening of the situation of social vulnerability and isolation, already present in the context of leprosy.

Objetivo: analizar las repercusiones del COVID-19 en la vida de las personas afectadas por la lepra y promover intervenciones para el enfrentamiento de los problemas vividos por los usuarios. Método: estudio cualitativo de tipo investigación participante, realizado de diciembre de 2021 a junio de 2022 en la región metropolitana de Recife en ocho servicios sanitarios de referencia para la lepra. Se realizaron entrevistas semiestructuradas, telemonitoreo e intervenciones en grupos de autocuidado junto a usuarios afectados por lepra y talleres con profesionales y gestores. Resultados: hubo repercusiones financieras en el acceso a los servicios de salud y en la socialización de los usuarios. Las intervenciones realizadas con los usuarios promovieron mejores prácticas de conocimiento sobre la patología, empoderamiento y autocuidado. Los talleres con directivos y profesionales facilitaron la reanudación e implementación de nuevos grupos de autocuidado, actividades comprometidas en la pandemia. Conclusión: el COVID-19 tuvo repercusiones en la situación económica, socialización y acceso a los servicios de salud, con empeoramiento de la situación de vulnerabilidad social y aislamiento, ya presente en el contexto de la lepra.

Dificuldades no enfrentamento da hanseníase no tratamento e pós-alta / Difficulties coping with leprosy during treatment and post-discharge

Objetivo: Identificar as principais dificuldades durante o tratamento e pós-alta de pacientes com hanseníase atendidos na Atenção Secundária em Teresina-Piauí e seu perfil epidemiológico. Métodos: Trata-se de um estudo transversal, quantitativo, que identificou necessidades e levantou dados de pacientes em tratamento de hanseníase em um serviço de referência localizado em Teresina-Piauí. Resultados: Na amostra, observou-se predomínio de pacientes do sexo masculino (58,5%), casados ou em união estável (54,7%), com ensino fundamental completo (62,3%), renda de 1 a 2 salários mínimos (66,0%) e residentes em Teresina-Piauí (90,6%). A idade média dos pacientes foi 53 anos. 9,4% abandonaram o tratamento. No pós-alta, 90,6% dos pacientes apresentaram algum tipo de sequela. Notou-se que a ausência de conhecimento sobre a hanseníase retardou o acesso ao sistema de saúde. Verificou-se associação significativa entre a variável presença de sequela e alteração de sensibilidade (p=0,014). Os relatos de preconceito foram mais frequentes durante o tratamento (41,5%), em relação ao pós-alta (15,1%). Conclusão: A hanseníase ainda é uma doença negligenciada, estigmatizada e de difícil diagnóstico, sendo necessário maiores investimentos em políticas públicas para a difusão de conhecimentos sobre a doença. Descritores: Hanseníase; Terapêutica; Perfil de Saúde; Conhecimento; Estigma Social.

Objective: To identify the main difficulties and the epidemiological profile during treatment and post-discharge in patients with leprosy treated at the Secondary Care level in Teresina-Piauí.Methods: This is a cross-sectional and quantitative study that identified needs and surveyed data from patients undergoing leprosy treatment in a reference service located in Teresina-Piauí.Results: In the sample, there was predominance of male patients (58.5%), married or in a stable union (54.7%), with complete Elementary School (62.3%), incomes of 1 to 2 minimum wages (66.0%) and residents of Teresina-Piauí (90.6%). The mean age of the patients was 53years old. 9.4% abandoned the treatment. 90.6% of the patients presented some type of sequelae post-discharge. It was noticed that lack of knowledge about leprosy delayed access to the health system. A significant association was verified between the "presence of sequelae" variable and change in sensitivity (p = 0.014). The reports about prejudice were more frequent during the treatment (41.5%) than in the post-discharge period(15.1%). Conclusion: Leprosy is still a neglected, stigmatized and difficult to diagnose disease, with a need for greater investments in public policies to disseminate knowledge about the disease. Descriptors: Leprosy; Therapy; Health Profile; Knowledge; Social Stigma.

ncRNAs: an unexplored cellular defense mechanism in leprosy.

Leprosy is an infectious disease primarily caused by the obligate intracellular parasite Mycobacterium leprae. Although it has been considered eradicated in many countries, leprosy continues to be a health issue in developing nations. Besides the social stigma associated with it, individuals affected by leprosy may experience nerve damage leading to physical disabilities if the disease is not properly treated or early diagnosed. Leprosy is recognized as a complex disease wherein socioenvironmental factors, immune response, and host genetics interact to contribute to its development. Recently, a new field of study called epigenetics has emerged, revealing that the immune response and other mechanisms related to infectious diseases can be influenced by noncoding RNAs. This review aims to summarize the significant advancements concerning non-coding RNAs in leprosy, discussing the key perspectives on this novel approach to comprehending the pathophysiology of the disease and identifying molecular markers. In our view, investigations on non-coding RNAs in leprosy hold promise and warrant increased attention from researches in this field.

Impact of basic psychological support on stigma and mental well-being of people with disabilities due to leprosy and lymphatic filariasis: a proof-of-concept study.

BACKGROUND: People with leprosy and lymphatic filariasis (LF)-related disabilities experience higher levels of poor mental well-being compared with the general community. Mental health services are often not available. This study was conducted to provide proof of concept that basic psychological support for people affected by neglected tropical diseases (BPS-N) can be given by peer supporters to reduce stigma, improve mental well-being and participation among clients. METHODS: The BPS-N approach was tested in a quasi-experimental design using mixed methods. To provide psychological support using the BPS-N, peer supporters were selected and trained. They supported people with leprosy- and LF-related disabilities. Preintervention and postintervention, stigma, mental well-being, depression and participation were measured through standard scales within 4 wk of the intervention; differences were tested using standard tests of significance. RESULTS: After 3 mo of intervention, the mean level of stigma had decreased (30.3 to 24, p<0.001); high mental well-being increased (0% to 13.3%, p<0.001); and moderate to severe depression decreased (88% to 47%, p<0.001). No significant change occurred in participation restrictions (87% to 92%, p=0.497). CONCLUSIONS: Psychological peer support using the BPS-N guideline appears effective in reducing stigma and improving mental well-being and can be operationalised. However, this should be confirmed through a randomised controlled trial. CONTEXTE: Les personnes atteintes de lèpre et de handicaps liés à la filariose lymphatique (FL) souffrent davantage d'un manque de bien-être mental que le reste de la population. Les services de santé mentale ne sont souvent pas disponibles hors des zones urbaines. Cette étude a été menée pour démontrer que le soutien psychologique de base pour les personnes atteintes de MTN (BPS-N) peut être dispensé par des pairs (dans une logique de transfert de tâches) afin de réduire la stigmatisation et d'améliorer le bien-être mental et la participation des clients. MÉTHODES: L'approche du BPS-N a été testée dans le cadre d'un modèle quasi-expérimental utilisant des méthodes mixtes. Pour fournir un soutien psychologique à l'aide du BPS-N, des pairs ont été sélectionnés et formés. Ils sont venus en aide aux personnes atteintes de lèpre et de déficiences liées à la FL. Avant et après l'intervention, les éléments suivants ont été mesurés à l'aide d'échelles standardisées: niveau de stigmatisation, bien-être mental, symptômes dépressifs, et enfin, la participation sociale. Les différences ont été testées à l'aide de tests de signification standardisés. RÉSULTATS: Après 3 mois d'intervention, le niveau moyen de stigmatisation a diminué (30,3 à 24, p<0 001) ; le niveau de bien-être mental a augmenté (0% à 13,3%, p<0 001) et la dépression modérée à sévère a diminué (88% à 47%, p<0 001). Aucun changement significatif n'a été observé en ce qui concerne les restrictions de participation (87% contre 92%, p=0 497). CONCLUSIONS: Le soutien psychologique par les pairs utilisant la ligne directrice BPS-N semble efficace pour réduire la stigmatisation et améliorer le bien-être mental. Toutefois, cette efficacité doit être confirmée par un essai contrôlé randomisé. ANTECEDENTES: Las personas con lepra y discapacidades relacionadas con la filariasis linfática (FL) sufren niveles más altos de malestar mental en comparación con la comunidad en general. Los servicios de salud mental no suelen estar disponibles a nivel periférico. Este estudio se llevó a cabo para proporcionar una prueba de concepto de que el Apoyo Psicológico Básico para personas afectadas por NTDs (BPS-N) puede ser dado por compañeros de apoyo (rotación de tareas) para reducir el estigma, mejorar el bienestar mental y la participación entre los clientes. MÉTODOS: El enfoque BPS-N se probó en un diseño cuasi-experimental utilizando métodos mixtos. Para proporcionar apoyo psicológico con el BPS-N, se seleccionaron y formaron compañeros de apoyo. Apoyaron a personas con lepra y discapacidades relacionadas con la FL. El estigma, el bienestar mental, la depresión y la participación se midieron antes y después de la intervención, mediante escalas estándar; las diferencias se comprobaron mediante pruebas estándar de significación. RESULTADOS: Después de 3 meses de intervención, el nivel medio de estigma disminuyó (30,3 a 24, p<0 001); el bienestar mental alto aumentó (0% a 13,3%, p<0 001) y la depresión moderada a grave disminuyó (88% a 47%, p<0 001). No se produjeron cambios significativos en las restricciones de participación (87% frente a 92%, p=0 497)). CONCLUSIONES: El apoyo psicológico entre iguales, utilizando la guía BPS-N, parece eficaz para reducir el estigma y mejorar el bienestar mental. Sin embargo, esto debe confirmarse mediante un ensayo controlado aleatorizado.

Impact of basic psychological support on stigma and the mental well-being of people with disabilities due to leprosy and lymphatic filariasis: a postintervention evaluation study.

BACKGROUND: A peer support intervention, called basic psychological support for people affected by neglected tropical diseases (BPS-N), was piloted in India to improve mental well-being and social participation and to reduce stigma among people with disabilities due to leprosy or lymphatic filariasis. Preintervention and postintervention assessments showed improvements in mental well-being and reductions in depression and stigma. This study aimed to further evaluate this intervention at approximately 2 mo after its completion. METHODS: Scales were administered to 62 clients to measure stigma, depression, mental well-being and participation levels. Interviews with 13 clients and six peer supporters were conducted. RESULTS: Stigma scores were significantly reduced at 2 mo postintervention compared with preintervention and postintervention. The improvement in mental well-being detected at immediate postintervention had not changed significantly 2 mo later. Depression levels were higher than at postintervention, but lower than at preintervention levels. No significant differences were found in median participation scores, but the number of clients with moderate and severe participation restrictions reduced significantly from postintervention to 2 mo follow-up. Qualitative results showed that clients received information about their condition and treatment, and that some experienced positive effects on their emotions and self-esteem. CONCLUSIONS: This study provides additional evidence on the proof of concept of BPS-N. CONTEXTE: Une intervention de soutien par les pairs, appelée Soutien psychologique de base pour les personnes atteintes de maladies tropicales négligées (BPS-N), a été pilotée en Inde afin d'améliorer le bien-être mental et la participation sociale, et de réduire la stigmatisation, chez les personnes souffrant d'incapacités dues à la lèpre ou à la filariose lymphatique. Les évaluations avant et après l'intervention ont montré une amélioration du bien-être mental et une réduction de la dépression et de la stigmatisation chez ces personnes. Cette étude avait pour but d'évaluer cette intervention environ 2 mois après son achèvement. MÉTHODES: Des échelles ont été administrées à 62 clients pour mesurer la stigmatisation, la dépression, le bien-être mental et les niveaux de participation. Des entretiens ont été menés avec 13 clients et 6 pairs aidants. RÉSULTATS: Les scores de stigmatisation ont été significativement réduits deux mois après l'intervention par rapport à la situation avant et après l'intervention. L'amélioration du bien-être mental détectée immédiatement après l'intervention n'a pas changé de manière significative deux mois plus tard. Les niveaux de dépression étaient plus élevés qu'après l'intervention, mais plus bas qu'avant l'intervention. Aucune différence significative n'a été constatée dans les scores médians de participation, mais le nombre de clients ayant des restrictions de participation modérées et sévères a diminué de manière significative entre la période post-intervention et les deux mois de suivi. Les résultats qualitatifs ont montré que les clients ont reçu des informations sur leur état et leur traitement, et que certains ont ressenti des effets positifs sur leurs émotions et leur estime de soi. CONCLUSIONS: Cette étude a fourni des preuves supplémentaires de l'efficacité de la BPS-N. INTRODUCCIÓN: Una intervención de apoyo entre iguales, denominada Apoyo Psicológico Básico para personas afectadas por enfermedades tropicales desatendidas (BPS-N), se puso a prueba en la India para mejorar el bienestar mental y la participación social y reducir el estigma entre las personas con discapacidades debidas a la lepra o la filariasis linfática. Las evaluaciones previas y posteriores a la intervención mostraron mejoras en el bienestar mental y reducciones en la depresión y el estigma. El objetivo de este estudio era seguir evaluando esta intervención ∼2 meses después de su finalización. MÉTODOS: Se administraron escalas a 62 clientes para medir el estigma, la depresión, el bienestar mental y los niveles de participación. Se realizaron entrevistas con 13 clientes y 6 compañeros de apoyo. RESULTADOS: Las puntuaciones de estigma se redujeron significativamente a los 2 meses de la intervención, en comparación con antes y después de la misma. La mejora del bienestar mental detectada inmediatamente después de la intervención no había cambiado significativamente 2 meses después. Los niveles de depresión eran más altos que en el postintervención, pero más bajos que en el preintervención. No se encontraron diferencias significativas en las puntuaciones medias de participación, pero el número de clientes con restricciones de participación moderadas y graves se redujo significativamente entre el periodo posterior a la intervención y los 2 meses de seguimiento. Los resultados cualitativos mostraron que los clientes recibieron información sobre su enfermedad y tratamiento, y que algunos experimentaron efectos positivos en sus emociones y autoestima. CONCLUSIONES: Este estudio aportó pruebas adicionales sobre la prueba de concepto de la BPS-N.

Steps towards eliminating Hansen's disease stigma.

Persons affected by Hansen's disease (PAHD) can develop long-term physical disabilities and psychological problems if the disease is not managed promptly and correctly. The complex and multi-faceted nature of stigma related to Hansen's Disease, and the discrimination arising from it, demands multiple parallel steps to improve the health, well-being and lived experience of People Affected by Hansen's Disease, including: 1) adoption and pursuance of a human rights based approach; 2) revocation of discriminatory laws; 3) education and training for healthcare workers; 4) new techniques and therapies to diagnose and treat HD without side-effects and to reduce risk of disabilities; 5) elimination of stigmatising terminology.

Stigma, depression and quality of life among people affected by neglected tropical diseases in Nepal.

BACKGROUND: Stigma and poor mental health are important factors influencing the quality of life (QOL) of people with neglected tropical diseases (NTDs). This study examines the relationship between stigma, depression and QOL among people affected by leprosy and lymphatic filariasis (LF) in Nepal. METHODS: A cross-sectional community-based survey was conducted among 102 NTD-affected persons (70 leprosy and 32 LF) using interview-administered questionnaires measuring the level of stigma (5-QSI-AP), symptoms of depression (PHQ-9) and QOL (WHOQOL-8). Three different regression models were developed, each using the ordinary least squares and Poisson regression to evaluate the association between stigma and QOL, depression and QOL, and stigma and depression. RESULTS: The mean scores were 21.8±4.4 for QOL, 6.6±5.6 for depression and 3.0±2.8 for stigma. Almost 17% reported the prevalence of depression symptoms. Both stigma (ß=-0.65, p<0.001) and depression (ß=-0.32, p<0.001) were associated with lower scores for QOL, while there was a significant positive relationship between stigma and depression (ß=0.92, p<0.001). Similar results were obtained from the Poisson regression models. CONCLUSIONS: The study showed a considerable burden of depression, stigma and poor QOL among study participants with leprosy and LF in Nepal. A holistic package of care that addresses the physical, mental and psychological well-being of people with NTD is required. CONTEXTE: La stigmatisation et la mauvaise santé mentale sont des facteurs importants qui influencent la qualité de vie des personnes atteintes de maladies tropicales négligées (MTN). Cette étude examine la relation entre la stigmatisation, la dépression et la qualité de vie chez les personnes atteintes de lèpre et de filariose lymphatique au Népal. MÉTHODES UTILISÉES: Une enquête communautaire transversale a été menée auprès de 102 personnes atteintes de MTN (70 de la lèpre et 32 de la filariose lymphatique) à l'aide de questionnaires administrés par entretien mesurant le niveau de stigmatisation (5-QSI-AP), les symptômes de dépression (PHQ-9) et la qualité de vie (WHOQOL-8). Trois modèles de régression différents ont été développés, chacun utilisant les moindres carrés ordinaires et la régression de Poisson pour évaluer l'association entre : (i) la stigmatisation et la QV; (ii) la dépression et la QV; et (iii) la stigmatisation et la dépression. RÉSULTATS: Les scores moyens étaient de 21,8±4,4 pour la QV, 6,6±5,6 pour la dépression, et 3,0±2,8 pour la stigmatisation. Près de 17% des personnes interrogées ont signalé la prévalence de symptômes dépressifs. La stigmatisation (ß = -0,65, p<0 001) et la dépression (ß = -0,32, p<0 001) ont été associées à des scores plus faibles pour la qualité de vie, tandis qu'il existait une relation positive significative entre la stigmatisation et la dépression (ß = 0,92, p<0 001). Des résultats similaires ont été obtenus à partir des modèles de régression de Poisson. CONCLUSIONS: L'étude a montré une incidence importante de dépression, de stigmatisation et d'une mauvaise qualité de vie parmi les participants atteints de lèpre et de FL au Népal. Il convient donc de mettre en place un ensemble de soins holistiques pour ces patients qui prendrait en compte le bien-être physique, mental et psychologique des personnes atteintes de MTN. ANTECEDENTES: La estigmatización y la mala salud mental son factores importantes que influyen en la calidad de vida de las personas con enfermedades tropicales desatendidas. las personas con enfermedades tropicales desatendidas (ETD). Este estudio examina la relación entre el estigma, la depresión y la CdV entre las personas afectadas por lepra y lepra y la filariasis linfática en Nepal. MÉTODOS: Se realizó una encuesta comunitaria transversal entre 102 personas afectadas por ETD (70 de lepra y 32 de filariasis linfática) utilizando cuestionarios entrevistas para medir el nivel de estigma (5-QSI-AP), los síntomas de depresión (PHQ- 9) y la CdV (OMS- 9). 9) y la calidad de vida (WHOQOL-8). Se desarrollaron tres modelos de regresión diferentes regresión de Poisson para evaluar la asociación entre: (i) el estigma y (ii) la depresión. entre: (i) estigma y CdV; (ii) depresión y CdV; y (iii) estigma y depresión. RESULTADOS: Las puntuaciones medias fueron 21,8±4,4 para la CdV, 6,6±5,6 para la depresión y 3,0±2,8 para el estigma. Casi el 17% informó de la prevalencia de síntomas de depresión. Tanto el estigma (ß = -0,65, p<0 001), como la depresión (ß = -0,32, p<0 001) se asociaron con puntuaciones más bajas para la CdV, mientras que hubo una relación positiva significativa entre el estigma y la depresión (ß = 0,92, p<0 001). Se obtuvieron resultados similares en los modelos de regresión de Poisson. CONCLUSIONES: El estudio mostró una carga considerable de depresión, estigma y mala CdV entre los participantes del estudio con lepra y FL en Nepal. Se requiere un paquete holístico de atención que aborde el bienestar físico, mental y psicológico de las personas con ETD.

Mental health, stigma and the quality of life of people affected by neglected tropical diseases of the skin in Kasai Province, Democratic Republic of the Congo: a sex-disaggregated analysis.

BACKGROUND: Worldwide, persons affected by skin Neglected Tropical Diseases (NTDs) may experience stigma and discrimination, which could lead to impaired societal functioning and poor mental wellbeing. Evidence of comorbidity of NTDs and mental health conditions is dominated by Leprosy, largely lacking in post-conflict areas, and rarely disaggregated by sex. METHODS: This cross-sectional survey is the first to explore depression, anxiety, stigma, and quality of life amongst people affected by Lymphatic Filariasis, Buruli Ulcer, Onchocerciasis or Leprosy in the Democratic Republic of the Congo. After a census through active case identification, the survey was completed by 118 persons (response rate 94.4%). RESULTS: In total, 58.3% of men and 80.0% of women screened positive for major depressive disorder (PHQ-9). Symptoms indicative of generalised anxiety disorder (GAD-7) were displayed by 54.8% of men and 62.2% of women. Being female, having a disability, experiencing stigma and lower physical quality of life were predictors of depression. Anxiety was predicted by age, physical quality of life, disability (for men only) and environmental quality of life (for women only). CONCLUSIONS: Integrated, intersectoral and gender-sensitive initiatives are needed to respond to the many biopsychosocial challenges that persons affected face. CONTEXTE: Dans le monde entier, les personnes atteintes de maladies tropicales négligées (MTN) peuvent faire l'objet d'une stigmatisation et d'une discrimination, ce qui peut entraîner une altération du fonctionnement de la société et un mauvais bien-être mental. Les preuves de la comorbidité des MTN et des troubles de la santé mentale sont dominées par la lèpre, manquent largement dans les zones post-conflit et sont rarement ventilées par sexe. MÉTHODES UTILISÉES: Cette enquête transversale est la première à explorer la dépression, l'anxiété, la stigmatisation et la qualité de vie chez les personnes atteintes de filariose lymphatique, d'ulcère de Buruli, d'onchocercose ou de lèpre en République démocratique du Congo. Après un recensement par identification active des cas, 118 personnes ont répondu à l'enquête (taux de réponse 94,4%). RÉSULTATS: Au total, 58,3% des hommes et 80,0% des femmes ont été dépistés positifs pour un trouble dépressif majeur (PHQ-9). Des symptômes indiquant un trouble anxieux généralisé (GAD-7) ont été observés chez 54,8 % des hommes et 62,2 % des femmes. Le fait d'être une femme, d'avoir un handicap, d'être stigmatisé et d'avoir une qualité de vie physique inférieure était un facteur prédictif de la dépression. L'anxiété était prédite par l'âge, la qualité de vie physique, le handicap (pour les hommes uniquement) et la qualité de vie environnementale (pour les femmes uniquement). CONCLUSIONS: Des initiatives intégrées, intersectorielles et sensibles au genre sont nécessaires pour répondre aux nombreux défis biopsychosociaux auxquels sont confrontées les personnes touchées. ANTECEDENTES: En todo el mundo, las personas afectadas por Enfermedades Tropicales Desatendidas (ETD) cutáneas pueden sufrir estigmatización y discriminación, lo que podría conducir a un deterioro del funcionamiento social y a un bienestar mental deficiente. La evidencia científica sobre la comorbilidad de las ETD y las afecciones mentales está dominada por la lepra, en general insuficiente en zonas post-conflicto y rara vez se desglosan por sexo. MÉTODOS: Esta encuesta transversal es la primera que explora la depresión, la ansiedad, el estigma y la calidad de vida entre las personas afectadas por la filariasis linfática, la úlcera de Buruli, la oncocercosis o la lepra en la República Democrática del Congo. Tras un censo mediante identificación activa de casos, la encuesta fue completada por 118 personas (tasa de respuesta del 94,4%). RESULTADOS: En total, el 58,3% de los hombres y el 80,0% de las mujeres arrojaron resultados positivos para el trastorno depresivo mayor (PHQ-9). El 54,8% de los hombres y el 62,2% de las mujeres presentaban síntomas indicativos de trastorno de ansiedad generalizada (TAG-7). Ser mujer, tener una discapacidad, sufrir estigmatización y una menor calidad de vida física fueron factores predictivos de la depresión. La edad, la calidad de vida física, la discapacidad (sólo en el caso de los hombres) y la calidad de vida ambiental (sólo en el caso de las mujeres) fueron factores predictivos de la ansiedad. CONCLUSIONES: Se necesitan iniciativas integradas, intersectoriales y con perspectiva de género para responder a los numerosos retos biopsicosociales a los que se enfrentan las personas afectadas.

The geographical distribution and socioeconomic risk factors of COVID-19, tuberculosis and leprosy in Fortaleza, Brazil.

BACKGROUND: Fortaleza (Brazil) is high endemic for coronavirus disease 2019 (COVID-19), tuberculosis (TB) and leprosy. These three diseases share respiratory droplets through coughing or sneezing as the main mode of transmission but differ in incubation time, with COVID-19 having a short and leprosy a long incubation time. Consequently, contacts of a patient are at higher risk of infection and developing these diseases. There might be scope for combined preventive measures, but a better understanding of the geographical distribution and relevant socioeconomic risk factors of the three diseases is needed first. This study aims to describe the geographic distribution of COVID-19, TB and leprosy incidence and to identify common socioeconomic risk factors. METHODS: The total number of new cases of COVID-19, TB and leprosy, as well as socioeconomic and demographic variables, were retrieved from official registers. The geographical distribution of COVID-19, TB and leprosy rates per neighbourhood was visualised in Quantum GIS, and spatial autocorrelation was measured with Moran's I in GeoDa. A spatial regression model was applied to understand the association between COVID-19, TB, leprosy rates, and socioeconomic factors. RESULTS: COVID-19 and TB showed a more homogenous distribution, whereas leprosy is located more in the south and west of Fortaleza. One neighbourhood (Pedras) in the southeast was identified as high endemic for all three diseases. Literacy was a socioeconomic risk factor for all three diseases: a high literacy rate increases the risk of COVID-19, and a low literacy rate (i.e., illiteracy) increases the risk of TB and leprosy. In addition, high income was associated with COVID-19, while low income with TB. CONCLUSIONS: Despite the similar mode of transmission, COVID-19, TB and leprosy show a different distribution of cases in Fortaleza. In addition, associated risk factors are related to wealth in COVID-19 and to poverty in TB and leprosy. These findings may support policymakers in developing (partially combined) primary and secondary prevention considering the efficient use of resources.

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.

Analysis of socioeconomic condition and bacillary index with respect to the development of Hansen's disease.

Background: Leprosy is a chronic granulomatous infection caused by Mycobacterium leprae or Mycobacterium lepromatosis and mainly affects the skin and peripheral nerves. Although treatable, its early intervention can significantly reduce the occurrence of disability. India accounts for more than half of new cases globally. This study was undertaken to better understand the clinical traits of newly diagnosed cases in a tertiary facility of Western Uttar Pradesh, and a few from Madhya Pradesh and Uttarakhand. Methods: The observational prospective study was carried out on all the newly diagnosed leprosy cases who visited the Outpatient Department of ICMR-National JALMA Institute for Leprosy and Other Mycobacterial Diseases, Agra, during October 2019-December 2022. After obtaining answers to a prestructured questionnaire with their consent, participants were enrolled in the study and underwent clinical examination and a slit-skin smear test. Results: A total of 56 cases were investigated, and among them, 20 (35.7%) and 36 (64.3%) women and men, respectively, had positive contact with persons affected by leprosy either within family, friends, or neighbors. It is observed that due to the delayed detection of leprosy cases, paucibacillary (PB) patients converted into multibacillary (MB) patients, and the number of MB cases is much higher compared to PB cases. Conclusion: Leprosy instances continue to spread frequently from sick to healthy people indicating continued transmission of leprosy in society. Multidrug therapy in the management of leprosy cases is effective; however, early diagnosis of PB cases is still a challenge and needs to be addressed on priority.

Leprosy: The age-old companion of humans - Re-evaluation and comparative analysis of Avar-period cases with Hansen's disease from the Danube-Tisza Interfluve, Hungary.

In recent years, our knowledge of leprosy in the past has substantially been enriched. Nonetheless, much still remains to be discovered, especially in regions and periods from where no written sources are available. To fill in some research gaps, we provide the comparative analysis of eight Avar-period leprosy cases from the Danube-Tisza Interfluve (Hungary). In every case, to reconstruct the biological consequences of leprosy, the detected bony changes were linked with palaeopathological and modern medical information. To reconstruct the social consequences of being affected by leprosy, conceptualisation of the examined individuals' treatment in death was conducted. In every case, the disease resulted in deformation and disfigurement of the involved anatomical areas (rhinomaxillary region, feet, and/or hands) with difficulties in conducting certain physical activities. These would have been disadvantageous for the examined individuals and limited or changed their possibilities to participate in social situations. The most severe cases would have required continuous support from others to survive. Our findings indicate that, despite their very visible disease and associated debility, the examined communities did not segregate leprosy sufferers but provided and cared for them, and maintained a strong enough social network that made their survival possible even after becoming incapable of self-sufficiency.

One Case of Tuberculosis-Like Leprosy with a Type I Leprosy Reaction.

Leprosy is a chronic infectious disease primarily affecting the skin and peripheral nerves and is caused by Mycobacterium leprae. Although effective control measures have significantly reduced its global incidence in recent years, its insidious onset and diverse skin manifestations pose considerable challenges to early diagnosis, particularly among young medical practitioners. This study reports a case of tuberculoid leprosy accompanied by a type I reaction (T1R) to leprosy, aiming to contribute to the broader understanding and management of the disease. The patient came from a leprosy-endemic region and had a family history of leprosy. They first presented with neuritis, characterised by numbness in the left upper limb, which is an early-stage symptom often overlooked. This case accentuates the importance of comprehensive examination techniques, including bacteriological and histological investigations, ultrasound and magnetic resonance imaging, to identify early nerve damage, which is critical for prompt diagnosis and intervention. According to World Health Organization data, approximately 200,000 new cases of leprosy are reported worldwide each year, with a prevalence rate of 0.2 cases per 10,000 individuals. The disease exhibits two clinical forms based on the host's immune response: tuberculoid leprosy in a well-immunised population and lepromatous leprosy in a poorly immunised host. The patient in this study demonstrated signs of tuberculoid leprosy, marked by isolated skin papules and plaques, and a T1R, a tissue-destructive, immune-driven inflammatory process. This case underscores the need for ongoing education and updated diagnostic tools to facilitate the early detection of leprosy, particularly in endemic areas. Moreover, attention must be given to the comprehensive care of patients, encompassing both physical and psychological aspects, to improve their quality of life and mitigate social discrimination and prejudice.