Towards a cross-neglected tropical disease perception study toolkit: A prototype toolkit developed in the field of leprosy

Summary Objectives: A negative perception of leprosy and other neglected tropical diseases (NTDs) is a problem that is seen globally. It results in discrimination, social exclusion and widespread mental health problems. There is a need for a standardised toolkit to assess the different aspects of perception of leprosy or other NTDs, including essential knowledge of these conditions. Methods: We developed the Perception Study Toolkit (PST). This toolkit consists of four measures, a Communication Needs Assessment questionnaire, Knowledge Attitudes and Practices questionnaire, the EMIC community stigma scale and the Social Distance Scale. It also comprises qualitative methods to investigate perception: the way people see leprosy, what they know about leprosy and their attitudes, beliefs and reported behaviour towards persons affected by leprosy. The PST is a toolkit and comprises separate instruments that assess different aspects of perception, it is also possible to use only one or a few of the instruments of the PST. Results: This is not applicable because this is not a study. Conclusions: The PST can help identify specific beliefs, knowledge gaps, misconceptions and fears to inform community education and behaviour change interventions and can be used to monitor and evaluate such interventions. Using a standard toolkit like the PST would enable assessment of the perception of leprosy or other NTDs that would allow comparison across projects and countries including monitoring of changes over time.