Factors contributing to delay in diagnosis and start of treatment of leprosy: analysis of help-seeking narratives in northern Bangladesh and in West Bengal, India

The objective of our research was to identify factors contributing to delay in diagnosis and start of treatment in leprosy, focussing on patients’ narratives of help-seeking behaviour. Our research took place in Purulia, West Bengal, India and in Nilphamari, northern Bangladesh. Between January and August 2000, we conducted semi-structured interviews with 104 patients that explored each individual’s narrative of help-seeking behaviour and the context of beliefs and attitudes towards leprosy. Subsequently we surveyed 356 patients currently receiving treatment for leprosy and recorded specific aspects of each help-seeking action and their reports of local beliefs and attitudes towards leprosy. Delay was estimated from time of first symptoms through to start of effective treatment (mean 18 months, median 9 months in Purulia and mean 20 months, median 12 months in Nilphamari). The number of help-seeking actions ranged from 1 to 7. Time committed to first actions contributed 86% (Nilphamari) and 79% (Purulia) to total delay. The most important contributor to delay in the first action occurred when people simply monitored or ignored first symptoms, 80% in Nilphamari and 67% in Purulia. With delay longer than 12 months as outcome, logistic regression analyses identified age over 35 years, multiple visits to practitioners in traditional medicine and multiple visits to health service practitioners as predictive of delay. Attending a nearby clinic and exposure to health education materials were predictive of early presentation reduced delay.