• Research priorities: Stigma and discrimination
• Country: Niger
• Budget: €199,835 | Project number: FP22.6
• Duration: April 2022 - September 2025
• Status: Ongoing

The study aims to develop and test the effectiveness of a replicable stigma-reduction intervention to improve leprosy knowledge and to reduce negative perceptions and stigmatising behaviours towards Leprosy patients among HCWs in endemic communities in Niger.

Understanding & Reducing Leprosy-Related Stigma Among Healthcare Workers in Niger

Project coordination

• The Leprosy Mission Niger
• Université Abdou Moumouni, Niamey, Niger

 Partners

• University of Rochester
• The Leprosy Mission England & Wales
• Ministry of Health, Niger

Project summary

Neglected Tropical Diseases (NTDs) are endemic in Niger Republic. These diseases and their consequences are especially common among rural populations. Leprosy is a NTD that persists in Niger, despite efforts to increase access to care. In 2019, 333 new cases of leprosy were diagnosed nationally, of which 23% had advanced disability, an indicator of late case detection. This is partly due to the stigma associated with the infection and its physical sequalae even after the disease has been treated successfully. Stigma caused by leprosy is deeply rooted in history and permeates every aspect of society, including the healthcare system. Preliminary evidence of stigma directed at patients by healthcare workers (HCWs) and lack of knowledge of leprosy among HCWs indicate the need to identify leprosy-stigma reduction activities if the disease is to be eradicated through access to early screening, treatment and rehabilitation.

The goal of this study is to utilize a community-based participatory approach to develop and test a leprosy-stigma training programme among health workers in 16 regional health centres in Niger. The study has two phases. First, using the WHO stigma framework, it aims to identify the local and contextual reasons behind stigma directed at patients by HCWs, and the resulting impact on people affected by leprosy. An understanding of these elements is necessary to develop and invest in effective leprosy stigma-reduction strategies and will contribute to the Zero Transmission / Zero Disability agenda.

A second phase of the study aims to develop and test the feasibility, acceptability and effectiveness of a training programme to reduce stigmatizing attitudes and behaviours among HCWs. Results will provide a contextual, yet replicable model for Leprosy stigma-reduction programme.

This study will be conducted collaboratively with active involvement of all stakeholders, including the national and international study team, healthcare providers, leaders and members of communities of persons affected by leprosy. The study will use a mixed method design to identify the elements of leprosy-related stigma perpetrated by HCWs, the impact on people affected by leprosy, and the development and testing of a leprosy stigma-reduction program targeting HCWs.

• Research priorities: Transmission
• Country: Kiribati
• Budget: €202,024 | Project number: FP22.21
• Duration: July 2022 - June 2026
• Status: Ongoing

The study will determine the effect of community-wide screening and treatment for leprosy, combined with PEP for household contacts and once-off mass chemoprophylaxis of the whole population of South Tarawa/Betio on the leprosy new case detection rate.

The COMBINE study: Defining the impact of combined community-wide screening and mass chemoprophylaxis for leprosy in Kiribati: a prospective community implementation study

Project coordination

• Pacific Leprosy Foundation

 Partners

• Ministry of Health and Medical Services, Kiribati
• The University of Otago
• The University of Sydney
• Centenary Institute

Project summary

Leprosy and tuberculosis are both spread by the respiratory route and transmission is greatly increased where there is crowding and poor economic conditions. In Kiribati the mean number of cases of leprosy reported annually over the period 2015-2019 was >1,500/1,000,000 people and for tuberculosis 4,680/1,000,000 people. The leprosy control programme in Kiribati currently includes examining the household contacts (HHC) of leprosy patients and giving them a single dose of rifampicin (SDR) as preventative therapy if they do not have leprosy. Mathematical modelling of leprosy transmission in Kiribati demonstrated that the most rapid control strategy would be to combine SDR for HHCs and mass SDR chemoprophylaxis to the community, but this has proved difficult to implement.

The COMBINE project provides a platform to screen a large population for both leprosy and tuberculosis and offer specific mass chemoprophylaxis as preventative measures for leprosy and latent tuberculosis. The tuberculosis component is building on previous studies on tuberculosis that have shown that active case finding in the community through screening and treatment substantially reduces the number of new cases of tuberculosis in succeeding years. Offering treatment for latent tuberculosis as well as screening may help reduce the incidence of tuberculosis. A combined leprosy and tuberculosis (TB) control programme will provide a model to improve delivery of treatment and preventative programmes for both conditions.

In this project, the research group aims to determine the effectiveness, operational constraints, interactions between the occurrence of leprosy and TB, and cost benefits of combined screening, treatment, and prophylaxis for leprosy and TB.

The project will be undertaken in the main population centres of Kiribati, South Tarawa and the adjacent islet of Betio, which are the epicentres of leprosy and tuberculous in Kiribati. Screening for leprosy will be by clinical examination done at the same time as chest x-rays, sputum sampling for PCR testing, and tuberculin skin tests to identify both active and latent tuberculosis. Those with suspicious skin lesions will be referred to the Skin clinic for diagnosis and treatment. Those with active tuberculosis will be treated for this according to WHO treatment guidelines and those with latent tuberculosis treated with 12 weeks of rifapentine and isoniazid. These treatments are also effective regimens to prevent the development of leprosy. All others will receive SDR as prophylaxis for leprosy.

At the end of the study the research group will be able to identify how effective the screening was been in detecting new cases, whether the number of cases has fallen compared with baseline, the acceptability of the rifampicin chemoprophylaxis, the steps needed to implement this effectively, and the costs involved. In addition, a detailed understanding of local spread of both leprosy and tuberculosis will be achieved through GPS mapping of the cases of leprosy, active tuberculosis and latent tuberculosis. This information will help other centres with high rates of leprosy and tuberculosis plan the best interventions for both conditions within their environments.

(The tuberculosis component is funded by a National Health and Medical Research Council grant from the Australian Government.)

Co-financer: Turing Foundation

• Research priorities: Transmission
• Country: Maldives
• Budget: €48,803 | Project number: FP22.8
• Duration: July 2022 – December 2023
• Status: Completed

The aim of this study is to develop an effective leprosy endgame strategy for low endemic settings.

Endgame strategy for leprosy in the Maldives: optimal targeting of post-exposure prophylaxis to interrupt transmission

Project coordination

Erasmus Medical Center

 Partners

• The Maldives National University
• WHO Regional Office for South-East Asia
• Health Protection Agency, Ministry of Health (Maldives)

Project summary

The Maldives have reported 80 new leprosy cases in 32 of 189 inhabited islands during 2008-2018. Only four new child cases were detected indicating that transmission of M. leprae might be close to interruption. The Maldives is committed to make the country leprosy-free in the coming decade: to interrupt transmission (zero new child cases) and achieve zero new autochthonous leprosy cases. As part of this commitment an endgame strategy should be developed. No evidence is available yet on effective endgame strategies in a low endemic setting, such as the Maldives. It has been recommended to include contact screening and prophylactic treatment with a single-dose of rifampicin (SDR) of contacts of a patient. However, it remains unclear which strategy and what the optimal profile of the target population (e.g., close contacts or high endemic community) should be in a low-endemic island setting to ensure achievement of interruption of transmission. The group’s research question is: “What would be an optimal endgame strategy to ensure interruption of transmission of M. leprae in a low endemic setting?”

To answer this question, an in-depth descriptive analysis of the leprosy epidemiology in the Maldives will be conducted. Historic and recent cases will be analysed by age, sex, clinical type, disability grade, socio-economic status and geographic distribution to inform progress made thus far and the current state of the leprosy situation. At the same time, mathematical modelling will be applied to explore which implementation strategy of single-dose rifampicin PEP would be most effective to interrupt transmission while treating as few healthy individuals as possible. Various implementation strategies of contact tracing and screening (e.g. close contacts vs community), will be considered and prophylactic treatment with SDR of contacts. Based on these findings, a strategy will be advised to the National Leprosy Programme in collaboration with WHO and local stakeholders.

Co-financer: Turing Foundation

• Research priorities: Disability
• Country: Côte d’Ivoire
• Budget: €123,970.00 | Project number: FP21.26
• Duration: August 2021 – July 2023
• Status: Completed

This project aims to develop an evidence-based intervention strategy to amplify the input and influence of people disabled by NTDs into programs and policies that impact their lives.

Exploring strategies and identifying effective mechanisms to mobilise persons disabled as a result of Neglected Tropical Diseases (NTD) to influence policy and programs to ensure person centered approach for affected persons in Cote d’Ivoire

Project coordination

• effect: hope
• National Leprosy Elimination Program Cote d'Ivoire

Partners

• Federation Des Associations des Handicapes de Cote d'Ivoire
• National Program NTD-MDA
• Ministry of Health, Cote d'Ivoire

Project summary

A significant proportion of people affected by NTDs are living with permanent disabilities. The health system in Cote D’Ivoire is focused on curative services and cannot manage alone the longer term physical and socio-economic consequences on the person affected by the disease. This is likely in part due to the lack of a strong coordination mechanism involving several sectors of human development, but is also a result of competing priorities for resources and the lack of clear demand and influence of persons affected by NTDs on agenda setting and resource allocation at the policy level.

The aim of this study is to develop an evidence based intervention strategy to amplify the input and influence of people disabled by NTDs into programs and policies that impact their lives, improving their access to psychosocial, physical and economic rehabilitation services. It will be conducted in Cote d’Ivoire, an African sub-Saharan country co-endemic for 10 NTDs. It is a two phase study consisting of a formative and intervention phase.

The purpose of the formative stage is to build an understanding of the knowledge, attitudes and experience of people disabled by NTDs in relation. The formative phase will adopt a cross-sectional design using quantitative and qualitative methods, including baseline and endline surveys. Based on these findings, the project intends to develop and test interventions to mobilise NTD affected people to influence government policy and multisectoral programs towards improved access to psychosocial, economic and physical rehabilitation services. A steering committee composed of people disabled by NTDs supported by key stakeholders will develop the intervention strategy.

The intervention strategy will be piloted in the health region of Gbeke, a co-endemic region reporting a significant number of disabilities caused by NTDs. The intervention phase will facilitate the organisation of persons disabled by NTDs, reinforce their capacity, support them in the testing and validation of the intervention strategy, monitor and evaluate the implementation of the strategy and using the lessons learned and recommendations finalized the strategy and develop a toolkit and knowledge translation plan for scaling up of the strategy.

The outcomes and lessons learnt through the study will be used to develop and validate an intervention strategy and toolkit that can be used and adapted to mobilize underrepresented groups to influence the policies and programs that impact their lives. The highly transferable nature of the research output will enable scaling up and replication to other regions of Cote d’Ivoire and in other settings.