• Research priorities: Disability
• Country: Côte d’Ivoire
• Budget: €120,000 | Project number: 707.19.62
• Duration: September 2019 – November 2022
• Status: Completed

The project aims to evaluate an integrated approach for early detection and effective management of leprosy and other skin NTDs in Cote d’Ivoire

Integrated approach with skin camp, eSkin Health app, and teledermatology in early detection and effective management of skin NTDs in Cote d’Ivoire

Project Coordination

• Hope Commission International

Partners

• School of Tropical Medicine and Global Health, Nagasaki University Japan
• Raoul Follereau Institute Côte d’Ivoire
• Institute Pasteur Côte d’Ivoire
• National Leprosy Elimination Program Côte d’Ivoire

Project summary

There is a high prevalence of debilitating and disabling diseases affecting the skin in Côte d’Ivoire. These include leprosy, Buruli ulcers, yaws and lymphatic filariasis. The true extent of these diseases is underappreciated for several reasons: 1) inadequate health seeking behaviour due to lack of awareness; 2) no organised campaigns to find possibly undiagnosed cases; and 3) a critical lack of trained healthcare personnel to diagnose these conditions. This project will address this gap by proposing an integrated approach of skin surveillance in remote communities using skin camps, community mobilisation, and a digital health tool.

The research group, together with a Japanese IT company, has developed a digital health tool called ‘eSkinHealthApp’, which is an application system on a tablet that can be used as a portable patient chart and for ‘telemedicine’. The group hypothesizes that focused training of healthcare workers, organisation of this mobile device-based decision support system, and connection via ‘telemedicine’ with remotely based expert will significantly improve diagnosis accuracy and case management of leprosy and other skin NTDs. The study will be implemented in Zouan Hounien health district of Côte d’Ivoire located in the western border with Liberia with high leprosy endemicity. Ten villages in this district were selected as potentially highly endemic area for skin NTDs based on previous local health district data.

Nurses and community health workers in the selected villages will be trained on leprosy and skin diseases and the use of the app The trained healthcare workers will then receive tablets with the eSkinHealth app.

Skin camps will organised in schools or at community gathering areas in the 10 selected villages. In addition, year-round active case detection and treatment activity by local healthcare workers is planned, supported by mhealth tools and teledermatology.

The aim is to improve the awareness of these neglected skin diseases, to provide a better estimation of their prevalence, to improve the knowledge of the local healthcare workers in diagnosis and management, and to maintain a network to support their clinical decision-making through telemedicine.

• Research priorities: Disability
• Country: Bangladesh, Ethiopia, India, Indonesia, Nepal
• Project no.: 704.16.71
• Budget: €931,525
• Duration: November 2016 - June 2025
• Status: Completed
• Co-funding partners: Turing Foundation and Plan:G

Full project title:
Two randomised controlled trials in ENL - ENLIST MTX

Project Coordination
London School of Hygiene Tropical Medicine

Partners
Leonard Wood Memorial Center for Leprosy Research
The Leprosy Mission International, BangladeshThe Leprosy Mission Trust IndiaALERT Center

Aim: Erythema nodosum leprosum (ENL) is a severe and extremely painful complication of leprosy which can occur before, during or after completion of antibacterial treatment. This study conducts two randomised controlled trials in several countries to test the effectiveness of methotrexate, which might provide a better option than current treatment methods.

Project summary
Erythema nodosum leprosum (ENL) is a severe and extremely painful complication of leprosy which can occur before, during or after completion of antibacterial treatment. ENL is often chronic and causes severe morbidity affecting not only the skin but also bones, joints, eyes, nerves, testes and kidneys. ENL may be fatal and it has been shown that the adverse effects of long term corticosteroid treatment also contribute to mortality. An effective treatment for ENL is thalidomide but this is not available in many leprosy endemic countries or severely constrained by availability, cost, adverse effects and justified concerns about teratogenicity. Thalidomide despite its effectiveness is rarely used as a first line agent. Other effective and preferably cheaper drugs need to be identified to reduce the burden of this condition.

There is some evidence that methotrexate may be useful in helping to control the debilitating symptoms of ENL and reduce the amount of corticosteroid treatment needed. Methotrexate has been available since the 1950s and is used throughout the world to treat common conditions such as psoriasis. It is also inexpensive. This study tests whether methotrexate is effective in ENL by comparing it with prednisolone (the corticosteroid most commonly used to treat ENL). Individuals with ENL are invited to participate in this study but neither they nor their doctors know which medication they are taking. At the end of the study  the two groups of patients will be compared to see which have had the best response as measured against pre-determined outcomes. The participants in the study are drawn from Bangladesh, Ethiopia, India, Indonesia and Nepal from centres who together form the ENL International STudy Group which is coordinated from the London School of Hygiene and Tropical Medicine. The Group will ensure that the results of the study are disseminated to the participants, other leprosy affected people and national and international agencies involved in policymaking about the best way to deal with ENL.

Funding partners:

• Research priorities: Disability
• Country: India, Indonesia
• Status: Completed

Project coordination

VU University Amsterdam, Athena Institute (The Netherlands) 

Leprosy reactions are serious complications of leprosy which lead to impairment, disability and for instance pain. Treatment of leprosy reactions is available, but individuals with reactions experience often adverse effects.This research project evaluated how the management of leprosy reactions may be improved by including the perspectives of affected persons and taking a participatory approach.

A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum

Duration

July 2018 - December 2020

Project Coordination

VU University Amsterdam, Athena institute, The Netherlands

Partners

• London School of Hygiene & Tropical Medicine, United Kingdom
• General Sutomo Hospital, Medicine Faculty Universitas Airlangga, Indonesia
• The Leprosy Mission India Hospital, India

Project summary

Leprosy reactions, are immune-mediated complications of leprosy, which play a significant role in the morbidity of people affected by leprosy. While a considerable amount of literature has been published on the clinical management of leprosy reactions, still few studies focus on the experience of the disease from the point of view of affected people in endemic countries such as Indonesia and India. This study aimed to investigate the barriers and facilitators people with leprosy reactions face in accessing quality management of leprosy reactions, and to analyse the impact of leprosy reactions on the lives of people affected in Indonesia and India.

This qualitative study involved interviews people affected by leprosy reactions and healthcare workers and focus groups with their family members. The participants affected were purposively selected based on the type of leprosy reactions. The data were collected through 71 interviews and 10 focus group discussions. A participatory approach was adopted to better explore the impact and the barriers and facilitators faced by people affected and assure research findings can be used to generate change in the local context.

This study found that both types of leprosy reactions were perceived as unpredictable and painful conditions. Occurrence of leprosy reactions restricted physical activities of participants, such as going to the bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety and anger. Some recounted that they felt stigmatised and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home and some concealed the name of leprosy, while most of the Indian respondents continued working even just prior to hospitalisation. Furthermore, this study found that perceived barriers to quality management of leprosy reactions include health financing-related issues, lack of competent health workforce, inadequate patient reporting systems, prohibition of thalidomide use (in Indonesia), and stigma. Meanwhile, the perceived facilitators were integrated health services, cheap drugs and supportive attitude from health workers and family members.

In conclusion, leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Through a participatory process, the research group identified a need for more peer support for people with leprosy reactions and inclusion of psychological and social aspects into the treatment sessions.

Related publications

Putri AI, de Sabbata K, Agusni RI, Alinda MD, Darlong J, de Barros B, et al. (2022) Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries. PLoS Negl Trop Dis 16(6): e0010476. 

Budget

€ 63,416 | Project number: 706.18.45

• Research priorities: Disability
• Country: India
• Status: Completed

Project coordination

Schieffelin Institute of Health Research & Leprosy Centre

Patients suffering from nerve damage caused by leprosy can have a loss of sensation in the feet, which leads to wounds on the sole of the foot. Non-infected simple ulcers are usually treated with total contact casts, which are heavy. This project develops and tests alternative lightweight devices with the help of computer software.

Design of customized offloading devices to promote healing of planter ulcers

 Duration

April 2018 - September 2019

Project Coordination

Schieffelin Institute of Health Research & Leprosy Centre

Partners

• RVS School of Engineering, Tamil Nadu, India

Project summary

Patients suffering from nerve damage caused by leprosy can experience a loss of sensation in the feet, which often leads to wounds on the sole of the foot. Non-infected simple ulcers are usually treated with total contact casts. These are heavy and prevent the wearer from doing their daily routine. In any underdeveloped country, where even a normal person may find it difficult to walk on village roads, a person with a cast will not be able to walk and is confined to the home. The current treatment devices need to be worn for at least one month continuously. A lightweight alternative device, that provides the same protection of the wound, would help the patient in carrying on with the routine work while the ulcer heals inside the cast.

The main research question in this project is if the existing gold standard devices can be replicated with light weight devices through customized and patient friendly designs. Furthermore, the researchers will determine if the effectiveness of the new offloading devices can be demonstrated with computer based simulations.

Initially, the project focuses on reviewing the existing offloading devices for the uniqueness and enabling and disabling factors in doing their ADL functions.This knowledge will then be incorporated in developing designs that could offload plantar pressures effectively through computer software. The material properties of the light weight material will be incorporated in the simulating software and about 6 designs will be identified and tested for its robustness.

At a later stage, through another project, these customized lightweight devices will be field tested through a trial to check effectiveness in healing ulcers.

Budget

€ 35,497 | Project number: 706.18.29