“I Wasted 3 Years, Thinking It’s Not a Problem”: Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study

Background: Worldwide, leprosy is one of the major causes of preventable disability. India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new cases and explore patients and providers’ perspectives into reasons for late presentation. Methodology/Principal Findings: This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7–30); patient and health system delay was 7(4–16.5) and 5.5(0.9–12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control. Conclusions: Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays. Author Summary: Leprosy is caused by bacteria that affects nerves, causing deformities. These deformities are preventable through early detection and prompt treatment. India reports more than 60% of world’s leprosy burden, of which new case with deformities is at increasing trend in the recent years, which is a public health issue. However, long delay in diagnosis have reported. In this study, we observed that patient delay is larger than health care provider delay. Many patients were ignorant of early symptoms of leprosy. In addition, we observed that limited community activities and misdiagnosis appears to be contributing to overall delay in diagnosis in areas of Maharashtra, India. Although more research on this subject should be conducted, this study highlights a need for further educational interventions for both patients and training for doctors.