Scoping review: Community-based programmes with people affected by leprosy.

OBJECTIVE: To analyse community intervention programmes for people affected by leprosy in 'global priority countries'. METHODS: Scoping review of articles in the databases PubMed, Scopus, SciELO, Lilacs and Web of Knowledge that made reference to community intervention programmes aimed at people affected by leprosy in global priority countries and which presented an evaluation of results. Analytical variables analysed were methodological characteristics of the study, type of intervention classified according to the Community-Based Rehabilitation Matrix, indicators and results of the evaluation, and the degree of participation of the community, which was graphically represented as a spidergram. RESULTS: Thirty articles met the inclusion criteria. They were mostly related to the health component of the RBC matrix and aimed at the adult population. All evaluated the indicators used positively. The degree of participation generally ranged between mobilisation and collaboration. CONCLUSION: Community intervention programmes for people affected by leprosy have a positive effect on health. There are attempts to include affected people and the community in implementing these programmes, but it is not possible to establish a direct relationship with effects of their participation on health due to the study designs used. Future research using more robust methods that include leprosy patients are necessary to evaluate the effectiveness of community participation.

OBJECTIF: Analyser les programmes d'intervention communautaire pour les personnes atteintes de la lèpre dans les "pays à priorité mondiale". MÉTHODES: Analyse de la portée à partir d'articles dans les bases de données Pubmed, Scopus, Scielo, Lilacs et Web of Knowledge qui faisaient référence aux programmes d'intervention communautaire destinés aux personnes touchées par la lèpre dans les pays à priorité mondiale et qui présentaient une évaluation des résultats. Les variables analytiques analysées étaient les caractéristiques méthodologiques de l'étude, le type d'intervention classé selon la Matrice de Réhabilitation Communautaire, les indicateurs et les résultats de l'évaluation, et le degré de participation de la communauté, qui était représenté graphiquement comme un spidergram. RÉSULTATS: Trente articles répondaient aux critères d'inclusion. Ils étaient principalement liés à la composante santé de la matrice RBC et visaient la population adulte. Tous ont évalué positivement les indicateurs utilisés. Le degré de participation relevait généralement entre la mobilisation et la collaboration. CONCLUSION: Les programmes d'intervention communautaire pour les personnes atteintes de la lèpre ont un effet positif sur la santé. Il y a des tentatives d'inclure les personnes affectées et la communauté dans la mise en œuvre de ces programmes, mais il n'est pas possible d'établir une relation directe avec les effets de leur participation sur la santé en raison des concepts d'étude utilisés. De futures recherches utilisant des méthodes plus robustes incluant des patients lépreux sont nécessaires pour évaluer l'efficacité de la participation communautaire.

Impact of community-based adherence support on treatment outcomes for tuberculosis, leprosy and HIV/AIDS-infected individuals in post-Ebola Liberia.

BACKGROUND: Partners In Health (PIH) committed to improving health care delivery in Maryland County, Liberia following the Ebola epidemic by employing 71 community health workers (CHWs) to provide treatment support to tuberculosis (TB), HIV and leprosy patients. PIH simultaneously deployed a socioeconomic assistance program with three core components: transportation reimbursement to clinics; food support; and additional social assistance in select cases. OBJECTIVE: This study aimed to evaluate how a CHW program for community treatment support and addressing socioeconomic barriers to care can impact patient outcomes in a post-conflict and post-epidemic context. METHODS: Retrospective observational study utilizing registry data from 513 TB, 447 HIV and 75 leprosy patients at three health facilities in Maryland County, Liberia. Treatment coverage and clinical outcomes for patient cohorts enrolled in the pre-intervention period (January 2015 to June 2015) and the post-intervention period (July 2015 to July 2017) are compared using logistic regression analyses. RESULTS: TB treatment coverage increased from 7.7% pre-intervention to 43.2% (p < 0.001) post-intervention and lost to follow-up (LTFU) rates decreased from 9.5% to 2.1% (p = 0.003). ART treatment coverage increased 3.8 percentage points (p = 0.03), with patient retention improving 63.9% to 86.1% (p < 0.001); a 6.0 percentage point decrease in HIV LTFU was also observed (p = 0.21). Despite an 84.3% treatment success rate observed for leprosy patients, pre-intervention data was largely unavailable and statistical significance could not be reached for any treatment outcomes pre-post intervention. CONCLUSIONS: The PIH approach to CHW community treatment support in Liberia demonstrates how, with the right inputs, excellent clinical outcomes are possible even in post-conflict and post-epidemic contexts. Care should be taken to position and support CHWs so that they have the opportunity to succeed, including full integration and recognition within the system, and the addition of clinical system improvements and social supports that are too often dismissed as unsustainable.

Mínima Información esencial para documentar el seguimiento de contactos y dosis única de Rifampicina (SDR) para el control de la Lepra: Guía práctica / No disponible

Hay un renovado interés en el control de la lepra mediante la búsqueda activa de casos, que cada vez más se combina con intervenciones quimioprofilácticas para intentar reducir la transmisión del Mycobacterium leprae. El Programa Profilaxis Post-Exposición a la Lepra (LPEP, en inglés) está activo en ocho países endémicos e implementa la administración de dosis única de rifampicina (SDR, en inglés) a contactos seleccionados de pacientes de lepra. LPEP ha desarrollado un sistema de vigilancia, incluyendo la obtención de datos, reportes y controles rutinarios para cada país participante. Este sistema es todavía en gran parte específico para el programa LPEP. Para facilitar la continuidad después de completar la fase del proyecto y la puesta en marcha en otros países interesados, se intenta identificar la cantidad mínima de datos para documentar adecuadamente las actividades de la búsqueda de contactos y administración SDR para el control de la lepra de forma rutinaria. Se describen cuatro indicadores para el caso índice (además de cuatro ya obtenidos habitualmente) y siete indicadores para el cribaje de convivientes/contactos vecinos y encuestas comunitarias. Se proponen dos formas genéricas para obtener toda la información relevante a nivel de campo y distrito para el seguimiento de individuos o datos si resultara necesario, facilitar directrices para desarrollar las distintas tareas, proporcionar control de calidad al registrar las cuestiones clave para valorar la SDR y facilitar poder informar. Estos impresos genéricos tienen que adaptarse a requerimientos locales en cuanto a diseño, idioma e indicadores operacionales adicionales

In leprosy control there is a renewed interest in active case finding, which is increasingly being combined with chemoprophylactic interventions to try and reduce M. leprae transmission. The Leprosy Post-Exposure Prophylaxis (LPEP) programme, currently ongoing in eight endemic countries, pilots the provision of single-dose rifampicin (SDR) to eligible contacts of leprosy patients. LPEP has developed a surveillance system including data collection, reporting and regular monitoring for every participating country. This system is still largely programm-especific to LPEP. To facilitate continuity after completion of the project phase and start-up in other interested countries, we aim at identifying the minimal set of data required to appropriately document contact tracing activities and SDR administration for leprosy control in a routine setting. We describe four indicators for the index case (plus four already routinely collected) and seven indicators for household/neighbour screening, and community surveys. We propose two generic forms to capture all relevant information required at field and district level to follow-up on individuals or data if needed, provide guidance on the sequence of tasks, provide quality control by listing key questions to assess SDR eligibility, and facilitate reporting. These generic forms have to be adapted to local requirements in terms of layout, language, and additional operational indicators

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal.

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.

Community-based needs assessment of leprosy patients in Chamrajanagar district, Karnataka, India.

OBJECTIVES: To assess the medical, disability prevention and rehabilitation and psychosocial needs of leprosy patients. DESIGN: Community-based cross sectional study. RESULTS: 259 registered leprosy-affected people were studied. 26% of subjects had presented by voluntary reporting. The mean detection delay was 8.25 months (SD 6.45). 66.8% of the study subjects had received regular treatment. Knowledge about multi-drug therapy (MDT) was satisfactory in 44.4% whereas knowledge of reactions was highly unsatisfactory. 7.7% had leprosy reactions among which only 25 received medical care. Disability proportion was 20.1% out of which 8.5% had Grade 1 and 11.6% had Grade 2 deformity. All these disabled individuals needed skin care, 44.2% of them needed wound care and 36.5% needed joint care. There was wide discrepancy between need for self care, training received and resources available for practising the same. The extent of dehabilitation was more among subjects with visible deformities. CONCLUSION: Medical needs identified in study subjects include capacity building of patients regarding MDT & reactions, plus awareness generation in general community such that voluntary reporting is enhanced and the detection dela shortened in the district. Strengthening drug inventory and distribution systems fo uninterrupted supply of drugs is essential. There is a need to reorient health care staff regarding leprosy management and DPMR. Rehabilitation needs identified are capacity building with regard to prevention of deformity and supplies (POD tool kit for self care) for the same. It is recommended that the district heath system should conceptualise and implement an evidence-based field level disability care and prevention programme, with community-based rehabilitation approach.

Sustainability of integrated leprosy services in rural India: perceptions of community leaders in Uttar Pradesh.

As part of a community-based action research to reduce leprosy stigma, village committees were formed in 3 hyper endemic states of India. From a total of 10 village committees with nearly 200 members from Uttar Pradesh, a systematic random sample of 69 men and 23 women were interviewed in-depth regarding their views on sustainability of integrated leprosy services, as currently adopted. Their recommendations were also sought for further enhancement. Percentages were computed and compared for statistical significance using the z-normal test. The findings show that less than 50% of the respondents were confident that the present trend in voluntary early reporting for MDT and management of complications was adequate to sustain the integrated leprosy services. There were no differences by men or women members and they felt that lack of proper facilities, training and orientation of staff are most influencing factors. Many suggestions were given for improving the sustainability.

Lessons from the evolution of a CBR programme for people affected by leprosy in Northern Nigeria.

OBJECTIVE: This paper reviews the 13-year evolution of the social economic activities in Northern Nigeria from a welfare-oriented to a community-centred programme for people affected by leprosy. DESIGN: The review relied on the analysis of policy and strategy documents, programme guidelines and statistical and evaluation reports. RESULTS: Findings revealed that the transformation among other things, demanded formulation of new programme policies and guidelines; and staff training in CBR principles and practice. Findings also showed that adopting CBR principles and community development projects can stimulate improvements in living conditions, self-esteem and acceptance of people affected by leprosy into the community. Regardless of becoming a more inclusive and participatory programme wherein people affected by leprosy contribute to programme implementation and evaluation; groups affected by leprosy remain economically dependent on the programme and partnership mobilisation is weak. This explains why the priorities for sustaining the processes and impacts generated through CBR in northern Nigeria include: i) empowering groups to access mainline services; ii) working through partners to implement CBR and attract extra funding/ownership of interventions, and iii) promoting human rights of people affected by leprosy and working for a barrier free environment. CONCLUSIONS: In the absence of an agreeable understanding and method of assessing sustainability in CBR, we recommend the field-testing of a proposal for evaluating sustainability, to determine its utility in different contexts. Such field-tests have the potential of influencing policy and practice in the future.

Community based rehabilitation programmes: monitoring and evaluation in order to measure results.

Although Community Based Rehabilitation has now formally existed for almost 30 years, few papers have been written about the results of this approach. The authors hope to contribute with this paper towards methodologies that will help to measure results of Community Based Rehabilitation programmes. The importance of establishing--prior to the development of Community Based Rehabilitation--an extensive baseline has not been extensively covered as the importance of it is almost self-evident; yet the lack of baseline data often severely hampers the possibility of being able to measure the effects of Community Based Rehabilitation. The article places considerable importance on management information systems and monitoring, since it is believed that evaluation will greatly benefit from both the existence of baseline data as well as a well-developed and well-implemented information system. The present article emphasises the need for participatory processes in the development of baseline data and information systems. Four key areas for measuring CBR are highlighted: people, power, public society and partnerships. Finally, a tool is presented in order to evaluate (or monitoring and evaluation) systematically. What gets measured gets done; If you don't measure results, you can't tell success from failure; If you can't see success, you can't reward it; If you can't reward success, you're probably rewarding failure; If you can't see success, you can't learn from it; If you can't recognize failure, you can't correct it; If you can demonstrate results, you can win public support.

Counselling of leprosy affected persons and the community.

"Counselling is a helping process where one person explicitly and purposefully gives his/her time, attention and skills to assist a client to explore their situation, identity and act upon solutions within the limitations of their given environment". The GATHER (greet, ask, tell, help, explain, return visit) technique can be useful in successful counselling. Counselling services have been proven successful in reducing stigma. While the scope for counselling is quite enormous, it will vary according to the specific need. The few common points which have been detailed in the text must be followed by all while providing counselling in different situations. The points as specified are: (1) Counselling of new patients. (2) Counselling of patients under treatment for few months. (3) Counselling of patients on completion of treatment. (4) Counselling of family members. (5) Counselling of community members. The points mentioned are about issues on which counselling should be centred.

Leprosy elimination through integrated basic health services in Myanmar: the role of midwives.

Myanmar is one of the top 16 countries identified by WHO as being hyperendemic for leprosy. Multi-drug therapy (MDT) was introduced in 1988 as a vertical programme and gradually integrated into the basic health services (BHS), achieving 100% coverage over the registered cases by 1995. To achieve maximum coverage of and benefit for patients, both leprosy vertical staff and BHS staff were trained to implement MDT whilst performing routine BHS activities. This included a total of 8615 trained midwives who were mobilized for the nationwide leprosy elimination programme (LEP). They worked at village level in various parts of the country and were willing and able to carry out basic tasks in leprosy management, such as the implementation of MDT using blister-calender packs carrying a month's supply of drugs. This study was performed to assess the workload of midwives and their attitude towards LEP. The authors conclude that midwives in Myanmar show a high level of commitment and reliability, which are essential contributing factors to achieve the current goal of leprosy elimination by the year 2000. Along with the present trend of decreasing prevalence rate, leprosy could no longer be considered as a public health problem at national level by the year 2000 in Myanmar. However, because of its long incubation period, new leprosy patients may arise even after the elimination target is achieved, whilst many other patients may become disabled. A community-based sustainable approach for the post-elimination phase, after the year 2000, will be essential and the contribution of the midwives may be of considerable importance.

Problem-based learning for tuberculosis and leprosy supervisors.

A problem-based learning programme for tuberculosis and leprosy supervisors is reported from Nigeria. It proved stimulating, motivating and enjoyable, and encouraged independent learning. The quality of their subsequent field work was average to good and showed sustained motivation.

O papel do terapeuta ocupacional na hanseniase: atuacao no estado de Sao Paulo / The role of occupational therapist in leprosy: actuation in Sao Paulo state

O artigo trata da evolucao do papel do terapeuta ocupacional, no atendimento a pacientes hansenianos. No primeiro momento sao destacadas as atuacoes nos hospitais e ambulatorios especializados, com analise do tipo de intervencao realizada. No outro, sao analisadas as novas formas de atuacao nos Centros de Saude, com enfase na atencao primaria. O estudo foi completado com uma analise critica de um documento oficial que descreve as atribuicoes dos terapeutas ocupacionais nessa area.

Paucibacillary primary dapsone resistance--a case report.

A Case of primary paucibacillary Dapsone resistance was presented. Its clinical suspicion and diagnosis are stressed. Emergence of dapsone resistance and its implications are shortly reviewed. A short note on its prevention is discussed. Literature is briefly reviewed.