Abstract

BackgroundWorldwide, 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 FindingsThis 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.ConclusionsRaising 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.

Highlights

  • Leprosy is one of the major causes of preventable disability and considered to be important public health problem mainly because of its potential to cause permanent and progressive physical deformities with serious social and economic consequences [1]

  • 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

  • The proportion of grade-2 disability among new cases reflects the level of the disease awareness in the community, as well as the capacity of the health system to detect new cases early

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Summary

Introduction

Leprosy is one of the major causes of preventable disability and considered to be important public health problem mainly because of its potential to cause permanent and progressive physical deformities with serious social and economic consequences [1]. Despite global success in the control of leprosy, delayed diagnosis and the resulting grade 2 disabilities (defined as any visible disability like ulcers, claw hand/toe, muscle wasting) remains important public health challenge [2]. On 30th January 2006, Government of India announced ‘elimination of leprosy as a public health problem’ (prevalence rate

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