Abstract
Delay in case detection is a risk factor for developing leprosy-related impairments, leading to disability and stigma. The objective of this study was to develop a questionnaire to determine the leprosy case detection delay, defined as the period between the first signs of the disease and the moment of diagnosis, calculated in total number of months. The instrument was developed as part of the PEP4LEP project, a large-scale intervention study which determines the most effective way to implement integrated skin screening and leprosy post-exposure prophylaxis with a single-dose of rifampicin (SDR-PEP) administration in Ethiopia, Mozambique and Tanzania. A literature review was conducted and leprosy experts were consulted. The first draft of the questionnaire was developed in Ethiopia by exploring conceptual understanding, item relevance and operational suitability. Then, the first draft of the tool was piloted in Ethiopia, Mozambique and Tanzania. The outcome is a questionnaire comprising nine questions to determine the case detection delay and two annexes for ease of administration: a local calendar to translate the patient's indication of time to number of months and a set of pictures of the signs of leprosy. In addition, a body map was included to locate the signs. A 'Question-by-Question Guide' was added to the package, to provide support in the administration of the questionnaire. The materials will be made available in English, Oromiffa (Afaan Oromo), Portuguese and Swahili via https://www.infolep.org. It was concluded that the developed case detection delay questionnaire can be administered quickly and easily by health workers, while not inconveniencing the patient. The instrument has promising potential for use in future leprosy research. It is recommended that the tool is further validated, also in other regions or countries, to ensure cultural validity and to examine psychometric properties like test-retest reliability and interrater reliability.
Highlights
Leprosy, called Hansen’s disease, is an infectious neglected tropical disease (NTD) known since ancient times, which mainly affects the skin, peripheral nerves and eyes
Ethical clearance was gained from the Armauer Hansen Research Institute (AHRI) in Addis Ababa, Ethiopia, the ethics board of Lurio University, Nampula, Mozambique, and from the Catholic University of Health and Allied Sciences (CUHAS) in Mwanza, Tanzania
The review of the available literature resulted in six relevant questionnaires that were previously used to determine the case detection delay (CDD) of leprosy Brazil [23], India [15], Nepal [24], and Sierra Leone [30], and to determine the CDD of tuberculosis in East Hararghe Zone [33] and Ethiopia [34]
Summary
Called Hansen’s disease, is an infectious neglected tropical disease (NTD) known since ancient times, which mainly affects the skin, peripheral nerves and eyes. On top of the long incubation period, the diagnosis of leprosy is often delayed because of physical and social barriers, and lack of awareness These issues contribute to ongoing transmission of the infection to other individuals and pose risks for the development of irreversible physical impairments [2, 4,5,6,7,8]. For this reason, Smith and colleagues (2014) argue that passive case finding and treatment of patients does not reduce the delay in diagnosis of leprosy effectively, and will not prevent disability in newly diagnosed patients [9]. The instrument was developed as part of the PEP4LEP project, a large-scale intervention study which determines the most effective way to implement integrated skin screening and leprosy postexposure prophylaxis with a single-dose of rifampicin (SDR-PEP) administration in Ethiopia, Mozambique and Tanzania
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