Validation of an instrument for assessing leprosy care in children and adolescents.

OBJECTIVES: to validate the content of an instrument for assessing leprosy care in individuals under 15 years old in the context of Primary Health Care. METHODS: methodological study of content validation, based on the evaluation of essential and derived attributes in primary care, in the professional version. For data analysis, the Content Validation Index (CVI ≥ 0.8) and Cronbach's Alpha were calculated. RESULTS: a higher percentage of judges among nurses (61.5%) was observed; with a doctorate (46.2%), and engaged in teaching and research (77%). The overall Content Validation Index of the instrument was 0.98. In the analysis of Cronbach's Alpha of the instrument, the assigned value was 0.717. CONCLUSIONS: the instrument represents an advancement in the measurement of health evaluation policies and can significantly contribute to improving the quality of care provided to children and adolescents with leprosy.

Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

Fatores que influenciam no processo de não cicatrização de úlceras cutâneas em pacientes com sequelas de hanseníase / Factors that influence the non-healing process of skin ulcers in patients with leprosy sequelae

Introdução: a Hanseníase é uma infecção granulomatosa crônica conhecida mundialmente como Lepra, causada pelo Mycobacterium leprae. Essa patologia afeta especialmente tecidos cutâneos, mucosas, nervos periféricos e as células de Schwann, podendo se manifestar em casos mais graves com comprometimento neural e com repercussão cutânea. Objetivo: realizar levantamento de dados, utilizando entrevistas e registros nos prontuários de pacientes portadores de úlceras cutâneas e diagnosticados com hanseníase em um Hospital Especializado em Dermatologia no interior de São Paulo, com o objetivo de analisar possíveis fatores relacionados ao processo de não cicatrização destas úlceras. Justificativa: considerando a complexidade envolvida na cicatrização das úlceras cutâneas, assim como as dificuldades dos pacientes em compreender esse problema, faz-se necessário entender os fatores que podem influenciar nesse processo e, consequentemente, capacitar pacientes e equipe multiprofissional envolvidos neste tratamento. Materiais e Métodos: estudo de campo, com abordagem qualitativa e quantitativa, utilizando-se um questionário semiestruturado, para conduzir uma entrevista, com pacientes portadores de úlcera cutânea, decorrente da hanseníase, em acompanhamento em um Hospital Especializado em Dermatologia no interior de São Paulo e subsequente coleta de dados no prontuário de cada participante para complementar as informações. Resultado: foram realizadas 30 entrevistas, no período de 25 de outubro de 2023 a 19 de dezembro de 2023. Nestas entrevistas foram convidados 32 pacientes para participarem do estudo, sendo que destes, dois não aceitaram participar. Considerações Finais: observou-se nesse estudo, que todos os participantes apresentam úlceras crônicas e fatores que influenciam negativamente no processo de cicatrização. Observou-se que a falta de informação sobre o diagnóstico, fatores sistêmicos, condições de higiene e o grau de incapacidade. Direcionando de forma mais assertiva as abordagens da equipe na realização da assistência a esses pacientes.

Introduction: Leprosy is a chronic granulomatous infection known worldwide as leprosy, caused by Mycobacterium leprae. This pathology especially affects skin tissues, mucous membranes, peripheral nerves, and Schwann cells, and may manifest in more severe cases with neural impairment and cutaneous repercussions. Objective: To carry out a data collection, using interviews and records in the medical records of patients with skin ulcers and diagnosed with leprosy in a Hospital Specialized in Dermatology in the interior of São Paulo, with the objective of analyzing possible factors related to the non-healing process of these ulcers. Justification: Considering the complexity involved in the healing of cutaneous ulcers, as well as the patients' difficulties in understanding this problem, it is necessary to understand the factors that can influence this process and, consequently, train patients and the multidisciplinary team involved in this treatment. Materials and Methods: field study, with a qualitative and quantitative approach, using a semi-structured questionnaire, to conduct an interview with patients with cutaneous ulcers resulting from leprosy, in follow-up at a Hospital Specialized in Dermatology in the interior of São Paulo, and subsequent data collection in the medical records of each participant to complement the information. Results: 30 interviews were conducted from October 25, 2023 to December 19, 2023. In these interviews, 32 patients were invited to participate in the study, and of these, two did not agree. Final Considerations: In this study, it was observed that all participants have chronic ulcers and factors that negatively influence the healing process. It was observed that there was a lack of information about the diagnosis, systemic factors, hygienic conditions and the degree of disability. Directing the team's approaches in a more assertive way in providing care to these patients.

Associação do poliformismo rs2228570 no gene VDR com o desfecho terapêutico em hanseníase / Association of rs2228570 polyformism in the VDR gene with therapeutic outcome in leprosy

A hanseníase é uma doença crônica que afeta principalmente os nervos periféricos e a pele, causada pelo Mycobacterium leprae, um parasita intracelular. O tratamento de primeira escolha na hanseníase é a poliquimioterapia (PQT) composta por rifampicina, dapsona e clofazimina. Estudos têm investigado a influência de fatores genéticos na suscetibilidade à hanseníase per se, porém não há investigações sobre a associação destes fatores com a resposta ao tratamento. Segundo os registros da OMS, o Brasil é o segundo país no mundo em número de casos retratamento da hanseníase. O gene do receptor de vitamina D (VDR) é um dos genes já associado com a doença. Além do papel importante no sistema imunológico, esse fator de transcrição, codificado por este gene, também atua no metabolismo de drogas. Assim, variações genéticas do tipo polimorfismos de nucleotídeo único (SNPs), no gene VDR podem afetar a resposta do organismo à doença e ao tratamento. Este estudo teve como objetivo avaliar a associação do polimorfismo rs2228570 no gene VDR com o desfecho terapêutico em casos de hanseníase multibacilar, através de estudo do tipo caso-controle. Foram analisados 315 prontuários de pacientes do estado de São Paulo, sendo 149 casos com necessidade de retratamento e 166 controles com sucesso terapêutico. A genotipagem do polimorfismo rs2228570 foi realizada por meio da técnica de discriminação alélica. A associação entre os genótipos e o desfecho terapêutico foi analisada por modelo de regressão logística multinomial, com ajuste dos dados pelas covariáveis sexo e etnia. Os resultados mostraram que o genótipo AA da variante rs2228570 no gene VDR está associado com o risco de retratamento na hanseníase multibacilar (Odds Ratio= 2.56; IC95: 1.13-5.82). Esse dado reafirma a importância da farmacogenética na terapêutica da hanseníase para a identificação de pacientes com maior risco de retratamento quando submetidos a poliquimioterapia convencional.

Leprosy is a chronic disease that mainly affects the peripheral nerves and skin, caused by Mycobacterium leprae, an intracellular parasite. The first-line treatment for leprosy is multidrug therapy (MDT) composed of rifampicin, dapsone, and clofazimine. Studies have investigated the influence of genetic factors on susceptibility to leprosy per se, but there have been no investigations into the association of these factors with treatment response. According to WHO records, Brazil is the second country in the world in the number of cases of leprosy retreatment. The vitamin D receptor (VDR) gene is one of the genes already associated with the disease. In addition to its important role in the immune system, this transcription factor, encoded by this gene, also plays a role in drug metabolism. Thus, genetic variations such as single nucleotide polymorphisms (SNPs) in the VDR gene can affect the body's response to the disease and treatment. This study aimed to evaluate the association of the rs2228570 polymorphism in the VDR gene with the therapeutic outcome in cases of multibacillary leprosy, through a case-control study. A total of 315 patient records from the state of São Paulo were analyzed, including 149 cases requiring retreatment and 166 controls with therapeutic success. Genotyping of the rs2228570 polymorphism was performed using the allele discrimination technique. The association between genotypes and therapeutic outcome was analyzed by multinomial logistic regression model, adjusting the data for covariates such as gender and ethnicity. The results showed that the AA genotype of the rs2228570 variant in the VDR gene is associated with the risk of retreatment in multibacillary leprosy (Odds Ratio= 2.56; IC95: 1.13-5.82). This data reaffirms the importance of pharmacogenetics in leprosy therapy for identifying patients at higher risk of retreatment when undergoing conventional multidrug therapy.

Estudo dos indivíduos e suas variáveis clínico-histopatológicas relacionadas ao aumento do risco de reação hansênica durante poliquimioterapia em área endêmica do nordeste do Brasil / Study of individuals and their clinical-histopathological variables related to the increased risk of leprosy reaction during multidrug therapy in endemic area of the northeast of Brazil / Estudio de individuos y sus variables clínico-histopatológicas relacionadas con el aumento del riesgo de reacción a la lepra durante el tratamiento multimedicamentoso en una zona endémica del noreste de Brasil

Introdução: a hanseníase apresenta potencial incapacitante secundário às reações hansênicas. Existe considerável número de indivíduos com episódios recorrentes de reação durante o tratamento. Objetivo: identificar características clínicas e histopatológicas que diferenciem pacientes com reação hansênica ou não. Método: estudo prospectivo de julho/2015 a dezembro/2016, com avaliação de indivíduos com diagnóstico novo de hanseníase atendidos no serviço de dermatologia do Complexo Hospitalar Clementino Fraga, na cidade de João Pessoa, Paraíba, Brasil. Os sujeitos foram classificados segundo os critérios de Ridley-Jopling/Madrid e por classificação operacional. Realizaram exame histopatológico no momento do diagnóstico e após 12 meses, e reavaliados após 6 e 12 meses do diagnóstico. Resultados: o grupo sem reação apresentou maior número de lesões com nítida delimitação. Observou-se predomínio das formas multibacilares entre indivíduos com reação. Quanto ao grau de incapacidade, o grupo com reação apresentou maior número de indivíduos com grau de incapacidade maior que zero. No grupo sem reação, encontrou-se menor frequência de fatores predisponentes. Notou-se correlação positiva do índice baciloscópico de biópsia cutânea com a ocorrência de reações. Discussão: a ausência de delimitação periférica das lesões pode se correlacionar com o surgimento de reação hansênica. O predomínio de reação entre os indivíduos que apresentavam grau de incapacidade maior que zero sugere associação de deficiência física e doença multibacilar. A ausência de fatores predisponentes aponta menor risco de reação hansênica. Observou-se correlação positiva do índice baciloscópico da biópsia com a ocorrência das reações. Conclusão: a significativa prevalência de reações graves enfatizam a importância do estudo contínuo da hanseníase e a necessidade de identificar precocemente as características clínicas sugestivas de reações hansênicas.(AU)

Introduction: leprosy reactions have the potential to cause disabilities. Many individuals experience recurrent episodes of reaction during treatment. Objective:to identify clinical and histopathological characteristics that differentiate patients with leprosy reactions from those without leprosy reactions. Method: this is a prospective study conducted from July 2015 to December 2016, evaluating individuals newly diagnosed with leprosy and treated at the dermatology service of the Clementino Fraga Hospital Complex in João Pessoa, Paraíba, Brazil. The subjects were classified according to the Ridley-Jopling/Madrid criteria and operational classification. They underwent a histopathological examination at the time of diagnosis and 12 months later, and were reassessed 6 and 12 months after the diagnosis. Results: the group without a reaction had a greater number of lesions with clear delimitation. Individuals with a reaction showed a predominance of multibacillary forms. The group with a reaction had a greater number of individuals with a degree of disability greater than zero. A positive correlation was observed between the bacilloscopic index and the occurrence of reactions. Discussion: the lack of clear boundaries around the lesions may be linked to the onset of a leprosy reaction. The higher incidence of reactions in individuals with some degree of physical disability indicates a correlation between disability and multibacillary disease. Additionally, a positive correlation was found between the bacilloscopic index of the biopsy and the occurrence of reactions. Conclusion: the high incidence of severe reactions underscores the need for ongoing studies on leprosy and the identification of early clinical characteristics that suggest leprosy reactions.(AU)

Perfil de conhecimento sobre hanseníase entre pacientes de um hospital universitário: um estudo transversal / Profile of Leprosy knowledge among patients at a university hospital: a cross-sectional study / Perfil de conocimientos sobre la lepra entre los pacientes de un hospital universitario: estudio transversal

Introdução: a hanseníase é uma doença causada pelo bacilo Mycobacterium leprae, que afeta a pele e o sistema nervoso periférico, apresentando alta endemicidade no Brasil. As representações sociais negativas sobre ela resultam da construção histórica baseada em crenças e medos. Uma das estratégias preconizadas pelo Ministério da Saúde para reduzir a carga de hanseníase é a educação em saúde, já que um dos obstáculos para a diminuição da incidência da doença é a falta de informação. Objetivo: este estudo tem como objetivo identificar o conhecimento dos pacientes de um ambulatório de dermatologia acerca da hanseníase. Metodologia: trata-se de um estudo observacional e transversal, que se desenvolveu por meio de um questionário com nove questões sobre hanseníase, elaborado pelos autores e aplicados em pacientes do ambulatório de dermatologia de um hospital público em Pernambuco. Resultados: quinhentas pessoas responderam ao questionário, sendo a maioria mulheres e pessoas com mais de 60 anos. Cerca de 92% já haviam ouvido falar sobre lepra/hanseníase, mas menos da metade sabia que se tratava da mesma doença. Além disso, apenas 50,4% tinham alguma informação sobre a doença, sendo a identificação da lesão cutânea a mais conhecida, enquanto a transmissão e o tratamento eram menos conhecidos. Conclusão: percebe-se, portanto, que medidas de educação em saúde visando melhorar o conhecimento acerca da transmissão e do tratamento são de grande importância, principalmente por parte de profissionais de saúde, educação e mídia. Além disso, mais estudos que evidenciem o conhecimento da população sobre a doença precisam ser realizados para que a falta de informação possa ser suprida pelos profissionais e, assim, o combate à hanseníase e ao preconceito associado a ela seja realizado de modo mais efetivo. (AU)

Introduction: Hansen's disease is caused by the bacillus Mycobacterium leprae, which affects the skin and peripheral nervous system. It is highly endemic in Brazil. Negative social representations about leprosy are the result of historical beliefs and fears. Health education is a recommended strategy by Brazil's Ministry of Health to reduce the burden of leprosy. Lack of health information is one of the obstacles to reducing the incidence of the disease. Objective: this study aims to identify the level of knowledge that the patients at a dermatology outpatient clinic have about leprosy. Methods: this is a cross-sectional observational study, that utilized a nine-question leprosy questionnaire and was administered to patients at a public hospital dermatology outpatient clinic in Pernambuco. Results: five hundred people answered the questionnaire. The majority of respondents were women over the age of 60. Approximately 92% of respondents were aware of leprosy/Hansen's disease, but less than half correctly identified it as the same disease. Furthermore, only 50.4% of respondents had any knowledge about the disease. The identification of skin lesions was the most well-known symptom, while transmission and treatment were less familiar. Conclusion: therefore, it is evident that health education measures aimed at improving knowledge about the transmission and treatment of leprosy are crucial, particularly among health, educators, and media professionals. Additionally, conducting more studies to assess the population's knowledge of the disease is necessary to address the lack of information and enable professionals to combat leprosy and prejudices more effectively. (AU)

[The plans of Ernesto Ottoni to Combat the "affliction of lepers:" lazarettos, treatments, and endeavors to tackle leprosy in nineteenth century São Paulo]. / Os planos de Ernesto Ottoni contra o "mal dos lázaros": lazaretos, terapêuticas e trabalho no combate à lepra em São Paulo, século XIX.

This article presents the plans for a lazaretto in the city of São Paulo in the mid-nineteenth century. It consists of the transcription and analysis of an opinion prepared by the physician Ernesto Benedicto Ottoni, addressed to the president of the province of São Paulo. The article includes an analysis of the plans for the building, bearing in mind the prevailing miasma theory; the contemporary conceptions of leprosy treatment, especially beliefs regarding the transmissibility of the disease; and the physician's idealization of the routines for the treatment, work, leisure, and recovery of patients.

O trabalho a seguir objetiva apresentar o projeto de estabelecimento de um lazareto para morféticos na cidade de São Paulo em meados do século XIX. Trata-se da transcrição e análise de um parecer elaborado pelo médico Ernesto Benedicto Ottoni e endereçado ao presidente da província de São Paulo. Analisamos os planos da construção do prédio, principalmente levando em consideração a teoria dos miasmas; concepções sobre as terapêuticas da lepra na época, sobretudo quanto à transmissibilidade da doença; e, por fim, a idealização do médico acerca das rotinas de tratamento, trabalho, lazer e recuperação dos doentes.

Individual, socioeconomic and healthcare access factors influencing the delays in leprosy presentation, diagnosis and treatment: a qualitative study.

BACKGROUND: This study investigated the factors influencing the presentation, diagnosis and treatment of leprosy in primary healthcare. METHODS: Qualitative research was conducted on patients undergoing treatment in a priority hyperendemic region for leprosy control in northeastern Brazil. Interviews were conducted between September and December 2020 at primary healthcare centers. Data were analysed based on the basic interpretive qualitative structure according to Andersen and Newman's model of healthcare utilisation. RESULTS: Knowledge of leprosy symptoms influenced patients' search for a diagnosis. Unfavorable socioeconomic conditions experienced by patients made diagnosis and treatment difficult. Incorrect evaluations by health professionals caused difficulties and delays in obtaining a diagnosis of leprosy. Perceptions about the disease, such as non-acceptance of the disease and the adverse effects of the medications, affected treatment seeking and treatment continuity. CONCLUSIONS: Patients with leprosy faced delays and healthcare access barriers related to knowledge of the disease, socioeconomic conditions and the structure of healthcare services, which must be considered when creating care plans, surveillance and control actions against leprosy. Appropriate interventions are necessary to reduce delays and better control the disease.

From Passos the Indian to Doctor Chernoviz: experiments to cure leprosy in nineteenth-century Pará. / Do índio Passos ao doutor Chernoviz: experiências de cura da lepra no Pará do século XIX.

This article analyzes an experiment to cure leprosy using the assacu plant (Hura crepitans L.) conducted in Santarém, Pará, in 1847, by an Indigenous man named Antonio Vieira dos Passos. The experiment was later repeated in other Brazilian provinces and abroad. This article establishes relationships between medical practices in other parts of the country while focusing on the dialog between official and Indigenous medicine. Newspaper articles and official documents of the time show that Indigenous knowledge of medicinal plants was widely recognized and utilized by physicians wishing to incorporate it into the official therapeutic repertoire.

O artigo analisa uma experiência de cura da lepra com assacu (Hura crepitans L.), realizada em Santarém, Pará, em 1847, por um indígena chamado Antonio Vieira dos Passos. A experiência passou a ser realizada nas demais províncias do Brasil e também no exterior. Por essa razão, o artigo estabelece relações com práticas médicas realizadas em outras partes do país, tendo como foco o diálogo entre a medicina oficial e a medicina indígena. A análise de matérias de jornais e documentos oficiais revelou que os saberes indígenas sobre o uso de plantas medicinais eram amplamente reconhecidos e utilizados pelos médicos com a intenção de incorporá-los em seu repertório terapêutico.

Percepção dos pacientes sobre a busca pelo diagnóstico da hanseníase e o atendimento nas Redes de Atenção à Saúde / Patients' perception of the search for a leprosy diagnosis and care in health care networks

O objetivo do estudo foi avaliar a percepção dos pacientes quanto ao atendimento nas Redes de Atenção à Saúde, desde o surgimento dos sintomas até o diagnóstico de hanseníase. Trata-se de um estudo qualitativo com 15 pacientes com hanseníase atendidos em um centro de referência no estado do Piauí. A coleta de dados foi realizada entre agosto e setembro de 2022, com o uso de um roteiro de entrevista semiestruturado de três blocos: 1) perfil sociodemográfico e econômico; 2) dados clínicos; e 3) questões semidirigidas relacionadas ao itinerário terapêutico para o diagnóstico e tratamento. Foram incluídos pacientes com hanseníase em tratamento e idade superior a 18 anos. Excluiu-se aqueles que não responderam questionamentos essenciais para os objetivos do estudo ou tangenciaram o tema nesse sentido. Predominaram pacientes mulheres, casadas, com média de idade de 58 anos, ensino fundamental completo, que recebiam menos de um salário-mínimo, autodeclaradas como pardas, residentes em Teresina e com a forma multibacilar da doença. Após a análise de conteúdo, emergiram três categorias temáticas: 1) dificuldades no autorreconhecimento das manifestações clínicas da hanseníase; 2) itinerário terapêutico do usuário com hanseníase na rede de atenção à saúde; e 3) percepção dos pacientes com hanseníase sobre o aten-dimento dos profissionais de saúde. A percepção dos pacientes permite concluir que a busca pelo diagnóstico e o atendimento em saúde foi um processo longo e conflituoso até que estes chegassem a ser atendidos na Atenção Primária.(AU)

The aim of the study was to evaluate patients' perception regarding care in healthcare networks, from the emergence of symptoms to the diagnosis of leprosy. This is a qualitative study with 15 patients with leprosy managed in a referral center in the state of Piauí. Data collection occurred from August to September 2022, with the use of a 3-block semi-structured interview guide: 1) sociodemographic and economic profile; 2) clinical data; and 3) semi-structured questions about the therapeutic itinerary taken for diagnosis and treatment. Included were leprosy patients aged undergoing treatment aged 18 years or above. Excluded were patients who failed to answer questions that were essential to meet study objectives or who barely touched upon the subject. There was a predominance of female, married patients, self-declared as brown (parda), at a mean age of 58 years, with complete elementary school education that earned less than minimum wage and lived in Teresina, with the multibacillary form of disease. After content analysis, three thematic categories emerged: 1) difficulty in self-recognizing the clinical manifestations of leprosy; 2) therapeutic route of the leprosy user in the healthcare network; and 3) perception of leprosy patients about treatment provided by healthcare professionals. The patients' perception allows us to conclude that the search for diagnosis and health care was a long and conflicting process until they reached Primary Care.(AU)

Hi-plex deep amplicon sequencing for identification, high-resolution genotyping and multidrug resistance prediction of Mycobacterium leprae directly from patient biopsies by using Deeplex Myc-Lep

Background Expansion of antimicrobial resistance monitoring and epidemiological surveillance are key components of the WHO strategy towards zero leprosy. The inability to grow Mycobacterium leprae in vitro precludes routine phenotypic drug susceptibility testing, and only limited molecular tests are available. We evaluated a culture-free targeted deep sequencing assay, for mycobacterial identification, genotyping based on 18 canonical SNPs and 11 core variable-number tandem-repeat (VNTR) markers, and detection of rifampicin, dapsone and fluoroquinolone resistance-associated mutations in rpoB/ctpC/ctpI, folP1, gyrA/gyrB, respectively, and hypermutation-associated mutations in nth. Methods The limit of detection (LOD) was determined using DNA of M. leprae reference strains and from 246 skin biopsies and 74 slit skin smears of leprosy patients, with genome copies quantified by RLEP qPCR. Sequencing results were evaluated versus whole genome sequencing (WGS) data of 14 strains, and versus VNTR-fragment length analysis (FLA) results of 89 clinical specimens. Findings The LOD for sequencing success ranged between 80 and 3000 genome copies, depending on the sample type. The LOD for minority variants was 10%. All SNPs detected in targets by WGS were identified except in a clinical sample where WGS revealed two dapsone resistance-conferring mutations instead of one by Deeplex Myc-Lep, due to partial duplication of the sulfamide-binding domain in folP1. SNPs detected uniquely by Deeplex Myc-Lep were missed by WGS due to insufficient coverage. Concordance with VNTR-FLA results was 99.4% (926/932 alleles). Interpretation Deeplex Myc-Lep may help improve the diagnosis and surveillance of leprosy. Gene domain duplication is an original putative drug resistance-related genetic adaptation in M. leprae.

Avaliação de uma ferramenta de ensino no tratamento da hanseníase para profissionais da saúde na atenção básica / Evaluation of a teaching tool in the treatment of leprosy for health professionals in primary care

O uso de materiais didáticos sobre o tratamento da hanseníase pode auxiliar os profissionais de atenção básica a esclarecer as dúvidas dos usuários e ampliar o conhecimento.O objetivo consistiu em validar uma ferramenta educativa sobre o tratamento da hanseníase com a poliquimioterapia. O estudo consistiu em pesquisa realizada com 10 profissionais da rede de atenção básica em hanseníase, município de Fernandópolis. Foi confeccionada uma cartilha educativa com a participação de pesquisadores e docentes nas áreas da hanseníase e design. O estudo consistiu na execução de três fases: preparação; coleta de dados e interpretação; concretização e descrição dos resultados. Foi aplicado um questionário com 23 perguntas (relativas ao design e ao conteúdo). Verificou-se que os eixos temáticos com sugestões de mudanças foram relacionados à compreensão do tratamento; cartelas pauci ou multibacilares; local de aquisição dos medicamentos; horário dos medicamentos; consumo de bebida alcoólica; benefícios e reações do tratamento; abandono do tratamento; tratamento na gravidez, uso de pílula anticoncepcional e propostas de alterações em poucas figuras e no formato da cartilha. Os profissionais de saúde foram capazes de apontar melhorias e possíveis falhas com a finalidade de melhorar a qualidade do referido produto gráfico. Convém ampliar essa investigação para os usuários do programa de hanseníase que realizam ou realizaram a poliquimioterapia e vivenciaram aspectos positivos e dificuldades com o tratamento.

Hansenapp: Development of a mobile application to assist primary healthcare providers to control leprosy.

OBJECTIVE: To describe the development and validation of a mobile application to assist health professionals in the management of patients with leprosy and surveillance of contacts in primary healthcare. METHOD: A methodological and developmental study was conducted in three phases: integrative literature review, mobile application development and application validation by health professionals. The construction of the application was supported by the literature review, Nielsen's heuristics and expert validation. Five experts individually analysed the prototype draft and performed two rounds of iterations to refine their recommendations. The validation step was performed by consulting health professionals working in primary healthcare, who evaluated the application for relevance, clarity and usability using a questionnaire based on task-technology fit theory. RESULTS: The mobile app's content, navigation methods and interaction were refined based on the discussions with experts. Their recommendations were applied, and the mobile app was revised until the final version was approved. Content validity indexes of 0.94 (p = 0.007), 0.99 (p > 0.0001) and 0.93 (p = 0.01) were obtained. CONCLUSION: The developed application is a technological tool that could assist primary healthcare providers in dealing with leprosy patients and their contacts in terms of management, planning, monitoring, evaluation, treatment and follow-up, in addition to leprosy control actions.

Neuropathic ulcers in leprosy: clinical features, diagnosis and treatment.

Leprosy is a neglected disease caused by Mycobacterium leprae and Mycobacterium lepromatosis, and is related to significant disabilities resulting from the neural damage generated by this mycobacteria. Neuropathic ulcers-lesions that can appear at the plantar and extra-plantar levels-are one such disability, and diagnosis requires an adequate dermatological, neurological and microbiological evaluation. The treatment of these lesions is based on a multidisciplinary approach that includes debridement of the necrotic tissue, controlling infections, reducing pressure areas, optimising blood flow, and nerve decompression. This review aims to describe the clinical features, diagnostic methods and treatment of neuropathic ulcers in leprosy. The diagnostic methods and medical management used in leprosy ulcers are based on those used for diabetic foot. This requires radical change as these diseases are immunologically and physiologically very different.

Aspectos psicossociais associados à falha terapêutica da poliquimioterapia da hanseníase no estado de São Paulo, Brasil / Psychosocial aspects associated with therapeutic failure of multidrug therapy for leprosy in the state of São Paulo, Brazil

Na hanseníase, o fracasso na conclusão do esquema terapêutico da poliquimioterapia (PQT) é um dos motivos pela ocorrência de falhas terapêuticas, contribuindo para a transmissão continuada do bacilo, desenvolvimento de resistência aos medicamentos e necessidade de retratamento. Portanto, o objetivo deste estudo foi avaliar os componentes psicossociais dos pacientes submetidos a um ou mais tratamentos da PQT. Estudo de natureza qualitativa, realizado em Bauru, São Paulo, com 11 pacientes, por meio de entrevistas semiestruturadas: três sem retratamento e oito com retratamento. A interpretação dos dados foi realizada a partir das árvores de associação, derivada da análise de conteúdo de Bardin. Foram definidos cinco eixos temáticos: estigma social, autoestigma, relações interpessoais, atividade profissional, cuidados do paciente com a saúde e falhas na assistência profissional ao paciente. Os resultados indicaram que, apesar dos pacientes relatarem experiências de discriminação social, baixa autoestima, medo da rejeição e necessidade de sigilo do diagnóstico, os familiares funcionavam como rede de apoio. No trabalho, houve maior ocorrência de afastamentos, exonerações e benefícios trabalhistas. Falhas na assistência profissional e alguns cuidados do paciente com a saúde podem se constituírem fatores que contribuem para a necessidade de retratamento da PQT. A investigação desses componentes psicossociais pode fornecer subsídios para o planejamento das ações educativas dos profissionais de saúde a fim de evitar o retratamento da PQT, reduzir as falhas terapêuticas e favorecer à adesão ao tratamento.

Assessment of neuropathic pain in leprosy patients with relapse or treatment failure by infrared thermography: A cross-sectional study.

BACKGROUND: Neuropathic pain (NP) is one of the main complications of leprosy, and its management is challenging. Infrared thermography (IRT) has been shown to be effective in the evaluation of peripheral autonomic function resulting from microcirculation flow changes in painful syndromes. This study used IRT to map the skin temperature on the hands and feet of leprosy patients with NP. METHODOLOGY/PRINCIPAL FINDINGS: This cross-sectional study included 20 controls and 55 leprosy patients, distributed into 29 with NP (PWP) and 26 without NP (PNP). Thermal images of the hands and feet were captured with infrared camera and clinical evaluations were performed. Electroneuromyography (ENMG) was used as a complementary neurological exam. Instruments used for the NP diagnosis were visual analog pain scale (VAS), Douleur Neuropathic en 4 questions (DN4), and simplified neurological assessment protocol. The prevalence of NP was 52.7%. Pain intensity showed that 93.1% of patients with NP had moderate/severe pain. The most frequent DN4 items in individuals with NP were numbness (86.2%), tingling (86.2%) and electric shocks (82.7%). Reactional episodes type 1 were statistically significant in the PWP group. Approximately 81.3% of patients showed a predominance of multiple mononeuropathy in ENMG, 79.6% had sensory loss, and 81.4% showed some degree of disability. The average temperature in the patients' hands and feet was slightly lower than in the controls, but without a significant difference. Compared to controls, all patients showed significant temperature asymmetry in almost all points assessed on the hands, except for two palmar points and one dorsal point. In the feet, there was significant asymmetry in all points, indicating a greater involvement of the lower limbs. CONCLUSION: IRT confirmed the asymmetric pattern of leprosy neuropathy, indicating a change in the function of the autonomic nervous system, and proving to be a useful method in the approach of pain.

Therapeutic itinerary of people with leprosy: paths, struggles, and challenges in the search for care.

OBJECTIVES: to understand how the therapeutic itineraries of people affected by leprosy are processed. METHODS: this is a descriptive, qualitative study, conducted in April 2018 in Barão de Grajaú in Maranhão, with interviews in the form of narratives of seven patients who had a late leprosy diagnosis. RESULTS: the search for diagnosis is a major difficulty in accessing health services, resulting in a late diagnosis and, consequently, with the presence of visible deformities. It was noticed that the health units do not have a flow, nor protocols for comprehensive treatment, and these people are referred to a referral unit in another state to perform sputum smear microscopy. FINAL CONSIDERATIONS: leprosy control actions need reformulations that seek the relationship between operational activities, epidemiological indicators and risk factors, in accordance with the real needs of each region, thus highlighting the gaps evidenced in the therapeutic itineraries.

Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers.

BACKGROUND: Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management. METHODS: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. RESULTS: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. CONCLUSION: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Number of people requiring post-exposure prophylaxis to end leprosy: A modeling study.

BACKGROUND: Worldwide, around 210,000 new cases of leprosy are detected annually. To end leprosy, i.e. zero new leprosy cases, preventive interventions such as contact tracing and post-exposure prophylaxis (PEP) are required. This study aims to estimate the number of people requiring PEP to reduce leprosy new case detection (NCD) at national and global level by 50% and 90%. METHODOLOGY/PRINCIPAL FINDINGS: The individual-based model SIMCOLEP was fitted to seven leprosy settings defined by NCD and MB proportion. Using data of all 110 countries with known leprosy patients in 2016, we assigned each country to one of these settings. We predicted the impact of administering PEP to about 25 contacts of leprosy patients on the annual NCD for 25 years and estimated the number of contacts requiring PEP per country for each year. The NCD trends show an increase in NCD in the first year (i.e. backlog cases) followed by a significant decrease thereafter. A reduction of 50% and 90% of new cases would be achieved in most countries in 5 and 22 years if 20.6 and 40.2 million people are treated with PEP over that period, respectively. For India, Brazil, and Indonesia together, a total of 32.9 million people requiring PEP to achieve a 90% reduction in 22 years. CONCLUSION/SIGNIFICANCE: The leprosy problem is far greater than the 210,000 new cases reported annually. Our model estimates of the number of people requiring PEP to achieve significant reduction of new leprosy cases can be used by policymakers and program managers to develop long-term strategies to end leprosy.

Key sources of strength and resilience for persons receiving services for Hansen's disease (leprosy) in Porto Velho, Brazil: What can we learn for service development?

BACKGROUND: Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil. METHODS: We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts. RESULTS: Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality. CONCLUSIONS: Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.