Delay in presentation in the context of local knowledge and attitude towards leprosy : identifying contributing factors using qualitative methods

The introduction of multi-drug therapy (MDT) in 1982 has transformed the treatment of leprosy. By the end of 2001 more than 12 million people had been treated and cured. Since 1991 attention has turned to the task of eliminating leprosy as a public health problem. Progress towards this goal was initially dramatic, with substantial falls in registered prevalence. However, in part this trend reflects the shortened duration of treatment. While prevalence has fallen, the number of new cases has continued at an unexpectedly high level. While reported rates of disability among new patients have also fallen, published statistics draw attention to countries and locations where they remain unacceptably high. The sustained numbers of new cases and the numbers presenting with advanced signs of disease give rise to questions about underlying processes. Central to the elimination campaign are the principles of early detection and treatment with MDT. Progress towards early detection promises a reduction in the rate of Grade 2 disability and a reduced transmission of infection. One interpretation of observed trends is that factors delaying presentation threaten progress towards early detection and to achievement of the elimination goal. Research Objectives: The present research is a response to this situation. The primary objective has been to develop an understanding of delay in presentation as the cumulative effect of help-seeking actions reflecting the local context of knowledge, attitude and practice towards leprosy. The focus has been on the experience of individual patients and their narrative of help-seeking actions. Results: Lack of awareness of the early symptoms was the primary contributor to delay in each location. In Malawi other contributors to delay included use of traditional medicines, interactions with the health services and delayed lay referral. Cost, gender and the AIDS epidemic were also relevant. In Nilphamari, northern Bangladesh, use of health services and traditional medicines was minimal. Expression of fear of the impact of leprosy on the family was a risk factor for delay. In Purulia, India, reported delays were shortest. Few people relied on traditional medicines and health services were effective in making referrals. Previous contact with an affected person and expression of fear for the impact of leprosy on the family were risk factors for early presentation. In Hubli, India, health services were effective in recognising the possibility of leprosy but patients did not comply with the referrals. In Paraguay delay was linked to traditional health beliefs, reliance on natural healers, interactions with the health services, delayed lay referral, cost and gender. Discussion and Conclusions: Our assessment of the chosen methodology was that it provided information adequate for the problem-solving task. Research findings draw attention to three aspects of delay. First, we found delay to be a risk factor for impairment. Since the disability rate used as an indicator in leprosy control sanctions delays where there is no disability, we discuss the use of an alternative indicator based directly on delay. Second, awareness of factors contributing to delay provides an agenda for problem-solving activities. The present research draws attention to lack of awareness as the primary contributor. It identifies mixed experiences resulting from contacts with health services. It notes non-compliance with referrals. Third, the reported impact of the leprosy diagnosis and examples of enacted stigma draw attention to the persistence of stigmatising attitudes in each of the five fieldwork centres. These attitudes encourage concealment and denial. Findings suggest that delay might be considered a form of coping behaviour, allowing the affected person to come to terms with their disease before formal diagnosis and start of treatment. In this sense delay may be considered an indicator for the strength and persistence of traditional stigmatising attitudes.