Characteristics, clinical manifestations and management of leprosy in KwaZulu-Natal, South Africa: A 20-year retrospective study.

BACKGROUND: Although leprosy, a neglected tropical disease, has been eliminated (<1 case per 10 000 population) in South Africa (SA) since 1926, according to the World Health Organization, new cases continue to be reported. The management of leprosy poses several challenges, including patient adherence, education and insufficient training of healthcare practitioners. OBJECTIVES: To describe the biographical profile, clinical manifestations and treatment outcomes in patients with leprosy in KwaZulu-Natal Province. METHODS: This retrospective study aimed to analyse the clinical data of leprosy patients in SA from 2002 to 2022. Data collected included patient demographics, comorbidities, cutaneous and neurological manifestations of leprosy, complications, treatment and adverse reactions. Descriptive statistics were used to summarise the data. RESULTS: The study analysed the clinical data of 194 leprosy patients from 2002 to 2022. The majority of patients were male and middle aged, with a disproportionate representation of black South Africans. Regarding socioeconomic status, 80% were unemployed and 40% were social grant recipients. Most cases were clustered in urban centres and diagnosed at secondary care facilities, with 15% being HIV positive. The majority of patients (90%) were classified as having multibacillary leprosy. Common symptoms included upper respiratory tract involvement, hair loss and painful nerves, with the face and limbs being most frequently affected. Cutaneous morphology predominantly included plaques and hypopigmented patches, while neurological signs included ulnar nerve tenderness, muscle weakness and sensory deficits. Debilitating neurological complications were found in one-fifth of patients. Despite initiation of multidrug therapy in most patients, a significant proportion (27.3%) did not complete the full course of treatment, and treatment reactions were noted in 33.5% of patients. CONCLUSION: These findings emphasise the urgent need for enhanced patient and healthcare worker education, particularly in primary healthcare settings, to improve adherence to treatment, advocate for prophylactic measures and prevent new cases. Achieving leprosy-free status in SA requires the collaboration of many role-players to address these challenges and improve healthcare practices.

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.

[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.

Task sharing for the management of leprosy by nurses in a tertiary healthcare setting of Northern India.

BACKGROUND: This study aimed to assess the effectiveness of nurse-led interventions in managing leprosy due to a shortage of dermatologists and other healthcare professionals. METHODS: A total of 100 leprosy patients were divided into experimental (n=50) and control groups (n=50). The intervention included face-to-face counseling by a trained nurse, motivational videos and exercise demonstrations. The control group received standard care. The primary outcome of interest was treatment adherence (Adherence to Refills and Medications Scale); other assessed outcomes included changes in perceived stigma (Stigma Assessment and Reduction of Impact scale), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder seven-item) and quality of life (WHO QOL-BREF Scale) from baseline to week 8. RESULTS: The intervention group had better treatment adherence (p<0.001). At baseline, moderately severe and severe depression prevalence was 18% and 28%, respectively, and anxiety was 25%, with no intergroup differences. Anxiety significantly decreased in the intervention group (p<0.001), but depression remained similar (p=0.291). Perceived stigma improved notably, especially in disclosure of concern (p<0.001), internal stigma (p<0.001) and anticipated stigma (p<0.001). Quality of life scores improved in the intervention group vs controls. CONCLUSION: Nurse-led interventions effectively enhanced quality of life and treatment adherence and reduced anxiety, depression and perceived stigma among leprosy patients. The study recommends strengthening the capacity of nurses for active involvement in leprosy care.

Atuação do fisioterapeuta durante o pré e pós operatório de neurolise em pacientes portadores de hanseníase: revisão de literatura / Physiotherapist's performance during the pre and post operative neurolysis operation in patients with leprosy: literature review

O paciente infectado pelo bacilo de Hansen, apresenta sintomas que o leva a buscar um diagnóstico. Durante seu tratamento e após, o paciente pode apresentar episódios de reações como por exemplo: manchas avermelhadas ou esbranquiçadas, eritema nodoso, crises de neurite que podem gerar incapacidades e impossibilitar suas atividades rotineiras. Uma das formas de minimizar os danos causados pela inflamação no trajeto nervoso é a cirurgia de neurolise, a qual consiste em realizar a descompressão nervosa. Foi realizada uma revisão bibliográfica, com as palavras chaves hanseníase, fisioterapia, reabilitação e neurolise. Foram consultadas as bases de dados pubmed, scielo, LILACS, BVS, BJHR e google. Onde foi proposto buscar na literatura artigos, textos, livros e revistas que apresentam protocolos e condutas realizadas pelo fisioterapeuta no processo de pré e pós operatório. A maioria dos artigos incluídos relataram um período de 5 semanas para o programa de reabilitação, sendo as duas primeiras indicação de imobilismo, na 3ª introdução dos exercícios e na 5ª semana o paciente já inicia a realização de suas atividade de vida diária mesmo que de forma adaptada. Tais intervenções visam não apenas a melhoria da função neuromuscular, mas também a prevenção de contraturas, deformidades, disfunções articulares e atrofia muscular. É crucial que esses protocolos considerem as necessidades e limitações individuais de cada paciente, de forma que alcance os melhores resultados clínicos e funcionais, desta forma contribui para a melhoria da qualidade de vida e a reintegração plena desses indivíduos à sociedade.

The patient infected with Hansen's bacillus presents symptoms that lead him to seek a diagnosis. During treatment and afterwards, the patient may experience episodes of reactions such as: reddish or whitish spots, erythema nodosum, neuritis attacks that can lead to disabilities and make routine activities impossible. One of the ways to minimize the damage caused by inflammation in the nerve pathway is neurolysis surgery, which consists of performing nerve decompression. A literature review was carried out, using the key words leprosy, physiotherapy, rehabilitation and neurolysis. The pubmed, scielo, LILACS, VHL, BJHR and google databases were consulted. Where it was proposed to search the literature for articles, texts, books and magazines that present protocols and conduct carried out by the physiotherapist in the pre- and post-operative process. Most of the articles included reported a period of 5 weeks for the rehabilitation program, with the 2nd first indication of immobility, in the 3rd introduction of the exercises and in the 5th week the patient already begins to perform their ADL's, even if in an adapted way. Such interventions aim not only to improve neuromuscular function, but also to prevent contractures, deformities, joint dysfunctions and muscular atrophy. It is crucial that these protocols consider the individual needs and limitations of each patient, in order to achieve the best clinical and functional results, thus contributing to the improvement of quality of life and the full reintegration of these individuals into society.

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.

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

Resumo 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.

Abstract 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.

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis.

OBJECTIVE: The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. INTRODUCTION: Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. INCLUSION CRITERIA: This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. METHODS: The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. RESULTS: The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient's perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. CONCLUSIONS: The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO Registration number: CRD42021243223.

Cuidado clínico farmacêutico e estratégia para o uso racional e adesão ao tratamento em pacientes com hanseníase numa Policlínica do Recife / Pharmaceutical clinical care and strategy to rational use and adhesion to treatment in Hansen's disease patients at a policlinic from Recife

Introdução: a hanseníase é uma doença de fácil diagnóstico, possuindo tratamento e cura. Quando diagnosticada tardiamente, pode trazer graves consequências para os portadores e seus familiares. Uma vez que o tratamento da hanseníase está inserido no componente estratégico da assistência farmacêutica, são exigidos cuidados e orientação. Há necessidade de intervenção clínica farmacêutica, com objetivo de acompanhar prescrições medicamentosas, analisando a adesão dos pacientes ao tratamento com a promoção de ações de educação em saúde, além de minimizar a ocorrência de eventos adversos relacionados aos fármacos do tratamento com possível redução de custos associados aos agravos. Objetivo: realizar o monitoramento para identificar e tratar as possíveis intercorrências que estão comumente presentes no tratamento de hanseníase. Metodologia: a realização do estudo deu-se com o acompanhamento dos pacientes atendidos no serviço de referência a partir da aplicação de questionários em consultas periódic as, vis to que a adesão ao tratamento, reduç ão dos eventos adver sos e controle dos comunic antes são de suma impor tância para o controle epidemiológico. Resultados: os principais sintomas dos indivíduos acometidos foram dormência e eritema nodoso hansênico. A maioria utilizava como tratamento o esquema multibacilar e talidomida. O acometimento relatado dos pacientes foi em nível moderado. Os pacientes possuíam comorbidades como hipertensão, artrose e diabetes. O acompanhamento clínico foi relatado como positivo pela maioria dos entrevistados. Conclusão: o desfecho do estudo mostra que a adesão do paciente é crucial para o êxito do tratamento e o acompanhamento do farmacêutico clínico constitui um pilar positivo, contribuindo para a prevenção de agravos e conscientização da comunidade.

Introduction: Hansen's disease is an easily diagnosed disease, with treatment and cure available. When diagnosed late, it can bring serious consequences for patients and their families. Since the treatment of Hansen's disease is part of the strategic component of pharmaceutical assistance, care and guidance are required. There is a need for clinical pharmaceutical intervention, aiming to monitor drug prescriptions, analyze patients' adherence to treatment while promoting health education actions, in addition to minimizing the occurrence of adverse events related to treatment drugs with possible reduction in costs associated to grievances. Objective:thus, the present study aimed to monitor, identify, and treat possible complications commonly present in the treatment of Hansen's disease. Methodology: The study was carried out with the follow-up of patients seen at the reference service, through the application of questionnaires in periodic appointments, since adherence to treatment, reduction of adverse events and control of communicants are of short importance for epidemiological control. Results:The main symptoms of Hansen's disease patients were numbness and leprosy nodosum erythema. Most used the multibacillary scheme and thalidomide as treatment. The reported involvement of patients was at a moderate level. Patients had other comorbidities such as hypertension, arthrosis and diabetes. The clinical assistance was reported as positive by most interviewees. Conclusion: The outcome of the study shows that patient's compliance is crucial for the success of treatment and the clinical pharmacist's accompaniment is a positive pillar, contributing to the prevention of complications and community awareness.

Use of mobile technology in preventing leprosy impairments.

AIM: Rapid development in telecommunication sector across the globe has revolutionised communication networks even in rural areas. At a tertiary leprosy referral hospital in Tamil Nadu, India, leprosy treatment was started for a male patient presenting with clinical signs and symptoms suggestive of leprosy. Since the patient was from a remote area, but needed close and continuous monitoring, he was provided with a mobile phone and a 12 h toll free number. METHODS: The patient was able to provide detailed regular information of his health status to the health worker, through the toll free number from the mobile phone given to him. The patient defaulted during his treatment. Within a few days of his defaulting, a follow up call was made and the patient revealed that he did not have enough financial resources to visit the hospital and continue his treatment. RESULTS: The patient was visited by a health worker and was reassured. Arrangements were made by the hospital to reimburse his travel costs. CONCLUSION: Utilising the advancements in technology would help in solving some of the key unanswered issues existing in leprosy. The use of technology helps facilitate and complement the work of health workers in reaching out to patients living in remote areas.IMPLICATIONS FOR REHABILITATIONThe use of M (mobile) - health in treatment compliance and adherenceThe use of M-health in the prevention and management of impairments in leprosyEffective monitoring and follow up of patients with impairments through mobile.

Repercussões das Políticas Nacionais de Controle da Hanseníase no Maranhão: registros históricos, artigos, relatos de experiências e narrativas / Repercussions of National Leprosy Control Policies in Maranhão: historical records, articles, experience reports and narratives

No final dos anos 40, a ciência descobria o tratamento para a hanseníase, medicamentos para a cura e interrupção do contágio, o que também viabilizou o fim do isolamento de indivíduos em leprosários nos anos subsequentes. Os avanços científicos, contudo, não impediram que o Brasil chegasse ao século XXI com regiões endêmicas de hanseníase. Em parte, a sociedade atual não trata o problema com preocupação, comporta-se, em geral, como se a doença tivesse sido eliminada, quando é fato que o Brasil ocupa a segunda posição entre os países com maior número de casos da doença, perdendo apenas para a Índia. A endemia hansênica é silenciada e faz novas vítimas, como se falar pouco a fizesse desaparecer, junto com os doentes. Também há de se convir que as gerações atuais precisaram conhecer e enfrentar diversos tipos de vírus, surtos, epidemias e pandemia. A hanseníase não detém o mesmo status de preocupação. A doença acomete os mais vulneráveis, geralmente os pobres, residentes em regiões isoladas. O assunto ganha pouco destaque na grande mídia e cabe, portanto, aos profissionais de saúde e ao poder público ofertarem os esclarecimentos devidos sobre a doença e o seu tratamento. Este livro é uma ferramenta histórica e traz visibilidade ao enfrentamento e aos avanços recentes no combate à hanseníase no Maranhão. O árduo trabalho tem alcançado resultados elogiosos e o reconhecimento de organizações brasileiras e internacionais. Com expectativa, desejo que a leitura dos fatos narrados neste material desperte maior interesse sobre o combate à hanseníase, de modo a garantir que o Maranhão e o Brasil estejam livres da doença ainda nesta geração.

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.

Actualidad en Lepra: Diagnóstico y Tratamiento

Conceptos de baciloscopia en Lepra Indicar el examen Hacer un seguimiento de la enfermidade

Apresentação do projeto - Hanseníase em Rede de Interfaces: saúde, educação e sociedade

O projeto “Hanseníase em Rede de Interfaces: saúde, educação e sociedade” tem a alegria de convidar você para participar da nossa live de apresentação do projeto, que será realizada no dia 30/03 (terça-feira) às 19 horas. Na ocasião, contaremos com a mediação de Andrea Taborda e Stefano Simoni e teremos como convidados: Ana Flávia Medeiros, Ricardo Ceccim, Alexandre Menezes e Reinaldo Bechler. Contaremos ainda com a presença de Wilka Martins, Mércia Cristina e Faustino Pinto. Participará do evento uma representante da Coordenação-Geral de Vigilância das Doenças em Eliminação do Ministério da Saúde. Além das falas dos coordenadores de programas já e existentes e de outras personalidades no movimento pela reintegração das pessoas acometidas pela hanseníase, dialogaremos sobre o que é o projeto Hanseníase em Rede, nossos objetivos e propostas

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.

Ofloxacin-Containing Multidrug Therapy in Ambulatory Leprosy Patients: A Case Series.

BACKGROUND: Standard dapsone and clofazimine-containing multidrug therapy (MDT) for leprosy is limited by drug tolerability, which poses treatment adherence barriers. Although ofloxacin-based regimens are promising alternatives, current efficacy and safety data are limited, particularly outside of endemic areas. We evaluated treatment outcomes in patients with leprosy receiving ofloxacin-containing MDT (OMDT) at our center. METHODS: We performed a retrospective chart review of patients treated for leprosy at our center over an 8-year period (2011-2019). Primary outcomes evaluated were clinical cure rate, occurrence of leprosy reactions, antibiotic-related adverse events, and treatment adherence. Analyses were descriptive; however, data were stratified by age, sex, spectrum of disease, region of origin, and treatment regimen, and odds ratios were reported to assess associations with adverse outcomes. RESULTS: Over the enrolment period, 26 patients were treated with OMDT (n = 19 multibacillary, n = 7 paucibacillary), and none were treated with clofazimine-based standard MDT. At the time of analysis, 23 patients (88%) had completed their course of treatment, and all were clinically cured, while 3 (12%) were still on treatment. Eighteen patients (69%) experienced either ENL (n = 7, 27%), type 1 reactions (n = 7, 27%), or both (n = 4, 15%). No patients stopped ofloxacin due to adverse drug effects, and there were no cases of allergic hypersensitivity, tendinopathy or rupture, or C. difficile colitis. CONCLUSIONS: We demonstrate a high cure rate and tolerability of OMDT in this small case series over an 8-year period, suggesting its viability as an alternative to standard clofazimine-containing MDT.

Translation and validation of a scale on the health care providers’ Attitudes Towards Persons Living With Leprosy (AT-PLWL)

Introduction@#Leprosy is a chronic, progressive, and complex disease. One of the factors contributing to the quality of case detection and treatment compliance is the attitudes of health care providers towards leprosy patients. Assessment of the attitudes of HCP towards leprosy patients is crucial because this is where leprosy patients base their care-seeking behaviors; hence, the creation of this scale.@*Objectives@#To create and validate a functionally equivalent Filipino translation of the HCP AT-PLWL scale.@*Methods@#A validity study was conducted into two phases. In Phase I, the AT-PLWL scale was translated (forward-back method) into Filipino, which underwent a cognitive debriefing (face validity) and pre-testing to 30 health care providers. In Phase 2, the reconciled forward translation underwent face and content validity and was pilot-tested to 100 health care providers. Reliability, both internal consistency and test-retest, were assessed via calculating Cronbach’s α and intra-class correlation coefficient, respectively.@*Results@#Content and face validity showed that all items in the scale were relevant. Cronbach’s α showed an adequate internal consistency of greater than 0.7 while the intra-class correlation coefficient of responses was greater than 0.80, indicating good correlation.@*Conclusion@#Overall, the final translated Filipino version of AT-PLWL scale is valid and reliable; hence, could serve as a tool to evaluate HCP’s attitudes.

Levantamento de dados para estudo dos fatores associados à falha terapêutica em hanseníase / Data collection to study the factors associated with failure leprosy therapy

A Hanseníase é uma doença infectocontagiosa de caráter crônico, evolução lenta, causada pelo Mycobacterium leprae (M. leprae). A transmissão ocorre por meio do trato respiratório, e para o desenvolvimento da doença existe a necessidade da susceptibilidade, além do contato íntimo e prolongado. Para fins terapêuticos a Organização Mundial da Saúde (OMS) traz uma classificação mais simples que é baseada no número de lesões cutâneas. Os casos com até cinco lesões são considerados paucibacilares e aqueles com mais de cinco lesões são multibacilares. Apesar da implantação da poliquimioterapia (PQT) pela OMS ter sido um importante avanço técnico na história do controle da doença, em 2019 ainda foram notificados 202.185 novos casos no mundo, sendo o Brasil o segundo em concentração de casos. Um indicador importante para o controle da hanseníase são as taxas de retratamento, definido como nova notificação de hanseníase em paciente que já tenha recebido tratamento anterior, suas causas incluem abandono, insuficiência terapêutica, falência terapêutica, alteração de esquema por erro diagnóstico e recidiva. Embora um grande número de casos de recidivas seja detectado no Brasil, apenas 8,4%, 13,3% e 1,9% dos casos podem ser explicados por mutações que sabidamente conferem resistência bacilar aos medicamentos utilizados na PQT: rifampicina (RFP), dapsona (DDS) e ofloxacina (OFLO), respectivamente. Além dos aspectos relacionados ao patógeno, a contribuição do hospedeiro para esse cenário, apesar de pouco estudada, deve ser de grande importância. No geral a resposta ao medicamento é variável entre indivíduos, ocasionando falta de eficácia farmacológica ou reação adversas, em partes esses eventos podem ser explicados pela farmacogenética. Conhecer fatores genéticos que interferem no metabolismo dos medicamentos pode contribuir para melhores resultados terapêuticos. Dentre os desafios para atingir a eliminação da hanseníase estão a ausência de novas ferramentas de diagnóstico e de entendimento das causas associadas a recidiva e à não adesão a PQT, uma vez que a resistência medicamentosa explica pouco da reativação da doença, deste modo, o presente estudo teve como finalidade constituir banco de dados em hanseníase para estudos de associação do tipo caso-controle sobre os fatores associados com a falha terapêutica da PQT convencional. Dos 240 prontuários avaliados, 119 foram classificados como casos de falência terapêutica ou recidiva e 121 como sucesso terapêutico, aqui denominados como controles, a maioria dos pacientes era do sexo masculino, branco e procedente do estado de São Paulo; Em relação à faixa etária de diagnóstico, 18% foram diagnosticados com idade entre 40 e 49 anos, enquanto nos controles 14% tiveram diagnóstico com idade inferior a 19 anos; quanto à forma clínica da doença, 59% dos casos e 47% dos controles foram classificados como virchoviano. Dentre os casos de falência terapêutica ou recidiva, a resistência molecular explicou apenas 5,8 % dos casos de retratamento. Esse dado reforça a urgência de estudos que esclareçam as causas da falha terapêutica em hanseníase, contribuindo assim para o estabelecimento de medidas que visem o alcance de melhores índices relacionados aos desfechos terapêuticos.(AU)

Leprosy is a chronic infectious disease with insidious evolution, caused by Mycobacterium leprae (M. leprae). Transmission occurs through the respiratory tract, and the onset of the disease depends on susceptibility, in addition to intimate and prolonged contact with untreated patients. For therapeutic purposes, the World Health Organization's (WHO) classification is based on the number of skin lesions. Cases with up to five lesions are considered paucibacillary and those with more than five lesion are multibacillary. Although the implementation of multidrugtherapy (MDT) by WHO was an important technical advance in the history of disease control. In 2019, 202,185 new cases were reported in the world, with Brazil the second in the highest number of cases. An important indicator for the control of leprosy is retreatment rate, defined as a new notification of leprosy in a patient who has already received previous treatment. Its causes include abandonment, therapeutic failure, , alteration of the regimen due to diagnostic error and relapse. Although a large number of cases of relapses are detected in Brazil, only 8.4%, 13.3% and 1.9% of cases can be explained by mutations that are known to confer bacillary resistance to drugs used in the MDT: rifampicin (RFP), dapsone (DDS) and ofloxacin (OFLO), respectively. In addition to aspects related to the pathogen, the host's contribution to this scenario, although little studied, is highly important. In general, the response to the drug treatment is variable between individuals, causing a lack of pharmacological efficacy or adverse reactions. , These events may be explained by pharmacogenetics. Knowing genetic factors that interfere with drug metabolism can contribute to better therapeutic results. Among the challenges to achieve leprosy elimination are the absence of new diagnostic tools and understanding of the causes associated with relapse and non-adherence to MDT, since drug resistance explains little about the reactivation of the disease. Thus, the present study aimed at constituting a leprosy database for case-control association studies on factors associated with conventional MDT therapeutic failure. Of the 240 medical records evaluated, 119 were classified as cases of therapeutic failure or relapse and 121 as therapeutic success, here referred to as controls. The majority of patients were male, white and from the state of São Paulo. Regarding the age of diagnosis, 18% were diagnosed between 40 and 49 years, while in controls, 14% were diagnosed under 19 years; as to the clinical form of the disease, 59% of the cases and 47% of the controls were classified as lepromatous. Among the cases of therapeutic failure or relapse, molecular resistance explained only 5.8% of retreatment cases. This data reinforces the urgency of studies that clarify the causes of therapeutic failure in leprosy, thus contributing to the establishment of measures aimed at achieving better therapeutic outcomes(AU).

La influencia del poder colonial sobre la población y la naturaleza determinaron los asentamientos de la enfermedad de Hansen en Surinam / No disponible

Los colonizadores holandeses en Surinam afirmaban que la lepra (o enfermedad de Hansen) era muy contagiosa y se transmitía entre humanos. Se construyó un "cordón sanitario" alrededor de los pacientes, sobre todo esclavos africanos y asiáticos contratados como trabajadores y sus descendientes. Se les perseguía y eran recluidos en aldeas para afectados de lepra muy remotas localizadas en la selva tropical. Algunos pacientes obedecieron a las autoridades, mientras que otros resistieron y se rebelaron. Sus historias revelan conceptos confusos sobre la enfermedad con su cultura y el medioambiente surinamés, y contienen importantes informaciones para comprender su mundo y la vida dentro y fuera de las colonias para lepra. Combinaban prácticas sanitarias tradicionales y plantas medicinales de su hábitat natural con tratamientos biomédicos (practicando un pluralismo médico). Creían en una gran variedad de explicaciones sobre la enfermedad, predominantemente los conceptos tabúes treef, tyina y animales tótem asociados con su hábitat natural (el bioma surinamés). Algunas de las explicaciones de su imaginario (por ejemplo, la lepra es transmitida por la tierra y ciertos animales) revelan una analogía sorprendente con descubrimientos científicos recientes. Nuestra investigación revela que la naturaleza contribuye a moldear el mundo de los pacientes de Hansen. Un planteamiento ecológico puede contribuir significativamente a la hora de comprender su mundo. Hay que efectuar una investigación histórica y antropológica comparativa para trazar la influencia de distintos biomas sobre los modelos locales. Las colonias de Hansen actualmente abandonadas y sus entornos naturales son lugares importantes para el patrimonio cultural

According to the Dutch colonizers in Suriname, leprosy (or Hansen's disease) was highly contagious and transmitted from human-to-human. A "cordon sanitaire" was constructed around the patients, mainly African slaves and Asian indentured laborers and their descendants. They were tracked down and incarcerated in remote leprosy settlements located in the rainforest. Some patients obeyed the authorities while others resisted and rebelled. Their narratives, revealing conceptual entanglement of the disease with their culture and the Surinamese natural environment, contain important information for understanding their world and their life inside and outside of leprosy settlements. They combined traditional health practices and medicinal plants from their natural habitat with biomedical treatments (practicing medical pluralism). They believed in a diversity of disease explanations, predominantly the taboo concepts treef, tyina, and totem animals associated with their natural habitat (the Surinamese biome). Some of their imaginary explanations (e.g., "leprosy is carried and/or transmitted through soil and certain animals") show a surprising analogy with recent findings from leprosy scientists. Our research shows that nature contributes to shaping the world of Hansen's disease patients. An ecological approach can make a valuable contribution to understanding their world. Comparative historical and anthropological research needs to be conducted to map the influence of different biomes on local explanatory models. The now deserted Hansen's disease settlements and their natural environments are interesting research sites and important places of cultural heritage

Thalidomide in the treatment of erythema nodosum leprosum (ENL) in an outpatient setting: A five-year retrospective analysis from a leprosy referral centre in India.

Erythema nodosum leprosum (ENL), or type 2 lepra reaction, is a multi-system immune-mediated complication in patients with multibacillary leprosy, frequently associated with chronicity and recurrences. Management of ENL requires high doses of oral corticosteroids, which may not be universally effective and pose serious adverse effects. Thalidomide has proven to be a steroid-sparing agent and is useful in controlling the reactions. However, many centres do not employ it in outpatient settings due to adverse effects and teratogenicity risk. Hence, we studied the feasibility of treating ENLs and reported the therapeutic outcome.This is a five-year record-based analysis of ENL leprosy patients treated with thalidomide, includingdescriptive statistics of demographic variables. Clinical characteristics were stratified by treatment compliance status (yes/no). Incidence rates and rate ratios for recovery stratified by bacillary index, type of ENL presentation and MDT treatment status were calculated.Out of 102 ENL patients treated with thalidomide, 68 (66.7%) were compliant and improved. Among them, ENL recurrence was noted in 11(16.2%) patients. The commonest thalidomide side effect was pedal oedema (73.5%). Patients with bacillary index (BI) less than or equal to 4.0 had a 37% increase in the incidence of recovery. Patients with acute ENL were almost twice as likely to recover as those with chronic ENL. Also, the improvement was two and a half times greater among those who completed MDT as compared to those on MDT. The study showed that thalidomide treatment for patients with ENL is possible in outpatientclinics. We also successfully prevented pregnancies to a larger extent through counselling for contraception.We observed that early institution of thalidomide induces faster remission and prevents ENL recurrence.