Delays in diagnosis can lead to more serious disability and provide opportunities for additional spread of infection. To explore reasons for diagnostic delays, the PEP4LEP team developed a culturally and context-sensitive nine-question questionnaire for use by local health workers, which was piloted and validated in Ethiopia, Mozambique and Tanzania.
In Ethiopia, use of this tool identified two factors associated with a delay in case detection of more than 12 months – fear of stigma and experiencing painless symptoms. The findings highlight the need to raise awareness of early symptoms in affected communities, and for initiatives to address leprosy-related stigma and build the ability of health workers to identify cases.
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In 2017, EDCTP funded two projects aiming to enhance leprosy control through greater use of ‘post-exposure prophylaxis’ (PEP) – pre-emptive drug treatment in those coming into contact with people with Mycobacterium leprae infections. Although PEP is recommended by WHO, its implementation can be held back by delays in diagnosis of new cases of M. leprae infection, which has an incubation time of up to 20 years. The PEOPLE study is assessing strategies to enhance take-up of PEP in the Comoros and Madagascar, while the PEP4LEP study is comparing facility- and community-based approaches for active case searching in districts of Ethiopia, Mozambique and Tanzania.
In 2022, the PEP4LEP study published baseline data on the prevalence of leprosy and treatment delays in study provinces in its three focus countries. In Ethiopia, the numbers of cases declined slightly between 2010 and 2019, although the number of new cases in children increased, suggesting ongoing transmission.
The mean case detection delay was more than 22 months. In Mozambique, data from 2015–2019 showed that the mean diagnosis delay exceeded 26 months, and 17% of those diagnosed had significant disability, indicative of late diagnosis. Similarly, in Tanzania study areas, the mean diagnosis delay was around 28 months.
The PEP4LEP project has identified key reasons for delays in leprosy diagnosis in Ethiopia.
New routes to leprosy prevention