Operational research
- Research priorities: Operational research
- Country: Sierra Leone
- Project no.: 707.19.60
- Budget: €193,723
- Duration: June 2019 – December 2023
- Status: Completed
Collaboration with traditional healers may facilitate detecting leprosy cases earlier than at present, thereby reducing the suspected delay in diagnosis, and detecting so far hidden leprosy cases in Sierra Leone.
Introducing a referral system with traditional healers to reduce the delay of leprosy diagnosis in Sierra Leone.
Project coordination
- National Leprosy and TB control programme; Ministry of Health and Sanitation, Sierra Leone
Partners
- German Leprosy and TB Relief Association(GLRA), Sierra Leone
Project summary
Sierra Leone belongs to the West African countries, which continue to report leprosy cases. Until now, no studies have been conducted to know the number of people affected by the disease and their distribution within the country. Many of the newly found leprosy patients are seen with deformities and disabilities. This shows that there is a delay in diagnosis and treatment of leprosy in Sierra Leone. Moreover, there are only few cases among children, which points towards a current weakness of the health system to identify, diagnose and treat leprosy patients at an early stage. Traditional healers have a well-trusted position in their communities. Many people in Sierra Leone indicate to first seek help in health care from traditional healers before visiting a health facility. During the Ebola outbreak in the country, traditional healers played a major role in the prevention and control of the infection. This has shown the great potential of working with traditional healers.
Therefore, this project plans to collaborate with traditional healers and to introduce a referral system between them and the health centres for suspected leprosy patients. The objectives are to see, whether this referral system:
- affects (reduces) the delay of diagnosis in the country;
- reduces the number of patients found already with disabilities; and
- finds hidden leprosy patients in the country.
A detailed mapping exercise has been done in order to know the geographical distribution of leprosy patients within the country according to the past five years (2013-2017). Moreover, important characteristics of those patients, for example whether they had already disabilities, were linked to those maps. With these maps, the researchers selected five intervention districts, where they will collaborate with traditional healers, and six comparable control districts, where passive case finding will continue. The project begins with a one-year planning and preparation phase, which involves extensive sensitization and subsequent training with the traditional healers, health facility staff and people affected by leprosy. The aim is to introduce all key components for a successful referral system. Afterwards, a two-year implementation phase begins. All newly diagnosed leprosy patients in the intervention and control districts will be assessed for their delay of diagnosis through the use of a questionnaire at the health centre. This allows evaluating the impact of the referral system with traditional healers on the mentioned objectives in the final project year.
- Research priorities: Operational research
- Country: Cameroon
- Status: Completed
Project coordination
FAIRMED Foundation (Cameroon)
Though leprosy had been declared eradicated, there is evidence in Cameroon that the number of new cases is increasing. Mhealth technology may be an efficient and inexpensive way to improve case detection.
Integrated strategy for early detection of leprosy and other skin Neglected Tropical Diseases in Cameroon
Duration
July 2018-June 2021
Due to circumstances this project has been stopped prematurely
Project Coordination
Partners
- University of Yaounde, Cameroon
- Ministry of Public Health, Cameroon
- ILEP Panel of People Affected, Switserland
- Fontilles (and Hyderabad Leprosy Control And Health Society), Spain
Project summary
Though leprosy had been declared eradicated, there is evidence in Cameroon that the number of new cases is increasing. Recent innovations involving mobile communication technologies are becoming an important resource for the provision of health services and public health interventions because they are easy to use, have a broader scope, are cheaper to use, easy to take along and are widely accepted. It has been demonstrated that mobile wireless technologies for public health, known as "mobile health", improve access to health information services and skills and promote behaviour change likely to prevent the occurrence of acute and chronic diseases.
This project aims to reduce the mean detection delay by introducing a community outreach porgramme and a diagnostic app for skin NTDs for health workers, the SkinApp.
Budget
€ 147,760
- Research priorities: Operational research
- Country: Bangladesh
- Status: Completed
Project coordination
The Leprosy Mission International (Bangladesh)
Leprosy affected persons may move to places depending on availability of health services, job facilities, or the hope of escaping for social stigmatization and other reasons. Such migration of leprosy affected persons may have an impact on disease transmssion.
Factors affecting migration, self-reporting and registration as leprosy cases in different prevalence area of Bangladesh
Duration
April 2018 - March 2020
Project Coordination
The Leprosy Mission International-Bangladesh
Partners
- Khulna University, Bangladesh
- Japan association for Drainage and Environment (JADE, Bangladesh)
Project summary
Leprosy affected persons may move to places depending on availability of health services, job facilities, or the hope of escaping for social stigmatization and other reasons. Such migration of leprosy affected persons may have an impact on disease transmission. Rural to urban migration within Bangladesh may contribute to the spread of the disease, to delayed detection (with more disability at diagnosis) and may cause defaulting.
This qualitative study will investigate factors causing relocation/migration, problems of migration-associated spreading which influence self-reporting and place of registration as leprosy cases in Bangladesh. For this purpose, in-depth interviews will be conducted with 120 affected people including new cases/ on treatment from different geographical locations of Bangladesh. In addition, around 20 key informants interviews will be conducted with leprosy and migration experts from governmental institutions and NGO's. The research outcomes will help to reduce migration-associated spreading of leprosy to new areas, promote enabling environment for social inclusion and increase self-reporting at early stage which is the most important part of leprosy control.
Budget
€ 34,911 | Project number: 706.18.24
- Research priorities: Operational research
- Country: Bangladesh
- Project no.: 707.19.45
- Budget: €150.233
- Duration: January 2020 - February 2025
- Status: Completed
Project coordination
Damien Foundation Bangladesh
Partners
Damien Foundation Belgium
Institute of Tropical Medicine, Antwerp, Belgium
Aim: Early case detection is crucial to avoid additional burden of disability in new leprosy cases. This study investigated the effectiveness of an active case finding strategy as opposed to routine leprosy case detection.
Full project title:
Assessing the effectiveness of Intensified Extended Contact Survey (IECS) to routine leprosy case detection in Bangladesh
Final project summary:
The Damien Foundation (DF), a Belgian non-governmental organization (NGO), supported leprosy control activities in Bangladesh from 1972 until December 2023. During this period, the Foundation covered a population of approximately 34 million people across 14 districts. Patient enrolment and data collection for this project were completed by 31 December 2023.
Since the beginning of its leprosy programme, Damien Foundation has used a Routine Contact Survey (RCS) approach to identify new leprosy cases. This project introduced an enhanced screening method called the Intensified Extended Contact Survey (IECS). Unlike routine screening, IECS uses door-to-door screening of a wider network of neighbours and community contacts surrounding newly diagnosed leprosy patients.
The IECS approach aims to detect leprosy cases earlier, which is expected to reduce the proportion of newly diagnosed patients presenting with Grade 2 Disability (G2D)—visible disabilities caused by delayed diagnosis and treatment.
Project findings showed that the number of newly detected leprosy patients increased in the intervention area, where IECS was implemented. However, the proportion of patients with visible disabilities (Grade 2 Disability) was higher in the intervention area (15%) than in the control area (11%). This may be because the intensive screening approach identified previously undetected or “hidden” cases among people who had been living with the disease for a long time without access to leprosy services.
The study also found that the average delay between the onset of symptoms and diagnosis was approximately 20.7 months. The delay was slightly longer in the intervention area (22.2 months) compared to the control area (19.4 months). This finding may be explained by the ability of IECS to uncover long-standing, undiagnosed cases that would otherwise have remained hidden within the community.
While the increased detection of cases demonstrates the effectiveness of active case-finding, the relatively high proportion of Grade 2 Disability and the long diagnostic delays suggest that additional undetected cases may still exist in the community. These findings highlight the need for repeated IECS activities over several years to improve early detection and reduce disability. Expanding IECS to include both newly diagnosed and previously treated leprosy patients could further strengthen programme outcomes.
The higher detection rates observed in the intervention area are likely due to increased community awareness and participation generated by the active case-finding approach. By screening not only household members but also a broader network of neighbours and community contacts, IECS reached individuals who might otherwise not have sought care. In contrast, case detection in the control area relied largely on passive reporting and routine follow-up of household contacts, resulting in a more limited scope for identifying new cases.
- Grant: LRI Regular Grant
- Budget round: 2015
- Research priorities: Operational research
- Country: Bangladesh, Brazil, Ethiopia, India, Indonesia, Philippines, United Kingdom
- Project no.: 703.15.40
- Budget: € 65,698
- Duration: May 2015 - July 2017
- Status: Completed
- Co-funding partners: Fully funded by the Austrian Leprosy Relief Association
Project coordination
London School of Hygiene and Tropical Medicine
Partners
Leonard Wood Memorial Center (Philippines)
ALERT Center (Ethiopia)
Anandaban Hospital (Nepal)
Bombay Leprosy Project (India)
FIOCRUZ (Brazil)
The Leprosy Mission (India)
General Soetomo Hospital (Indonesia)
Danish Bangladesh Leprosy Mission Hospital (Bangladesh)
Aim: In order to determine which therapies are most effective, this study developed the ENLIST ENL Severity Scale which measures the severity of ENL before, during and at the end of treatment.
Full project title:
Development and validation of severity scale for erythema nodosum leprosum (ENL)
Final project summary:
Erythema nodosum leprosum (ENL) is severe complication of leprosy which is associated with death and increased economic hardship. ENL is a difficult condition to treat and many affected individuals do not have access to safe, effective long term therapies. This project developed and tested the first reliable method of measuring the severity of ENL, the ENLIST ENL Severity Scale, and brought together leprosy workers from around the globe to meet this challenge. This scale is easy to use, and is able to demonstrate meaningful clinical change. Therefore it can now be used to find better ways to treat the condition, and moniter progress of patients receiving treatment.
Impact
Walker, S. L., Knight, K. L., Pai, V. V., Nicholls, P. G., Alinda, M., Butlin, C. R., ... & Erythema Nodosum Leprosum International STudy Group. (2016). The development of a severity scale for Erythema Nodosum Leprosum–the ENLIST ENL severity scale. Leprosy review, 87(3), 332-346.
Walker, S. L., Sales, A. M., Butlin, C. R., Shah, M., Maghanoy, A., Lambert, S. M., ... & Erythema Nodosum Leprosum International STudy Group. (2017). A leprosy clinical severity scale for erythema nodosum leprosum: An international, multicentre validation study of the ENLIST ENL Severity Scale. PLoS neglected tropical diseases, 11(7), e0005716.
World Health Organization. (2020). Leprosy hansen disease: management of reactions and prevention of disabilities: technical guidance. World Health Organization.