“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

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.

Factors associated with the delay of diagnosis of leprosy in north‐eastern Colombia: a quantitative analysis

“…This result, read in conjunction with the fact that only 1 of 10 patients suspected leprosy before diagnosis by a health professional, can be interpreted as a sign of a significant lack of disease awareness in the general population. Our findings are in accordance with a number of previous studies suggesting that lack of disease awareness among the patients is one of the key factors contributing to delayed diagnosis of leprosy worldwide [13,14].…”

Comprehensive measures succeeded in improving early detection of leprosy cases in post-elimination era: Experience from Shandong province, China

“…The importance of early diagnosis of leprosy can never be overemphasized in terms of reducing the reservoirs of bacilli and decreasing the risks of deformities [12]. For long time, the proportion of grade 2 disability (G2D), defined as any visible disabilities such as ulcers, claw fingers/toes and muscle wasting [13], among newly detected cases had been set as one of the most important epidemiological indicators to evaluate case-finding activities among different leprosy control programs [12].The global number of new cases with G2D, however, showed no decreasing trend from 12392 in 2006 [14] to 12,437 in 2016 [6], indicating a failure in early detection. In April 2016, WHO launched a 5-year global leprosy strategy and reduction in the rate of new G2D cases was set as one of the three main targets at global level [15].…”

Relación De La Lepra Con La Cobertura De La Estrategia De Salud Familiar Y Condiciones Socioeconómicas

“…Em Maharashtra (Índia), cenário de alta endemicidade, um estudo demonstrou a falta de consciência entre a comunidade sobre os sinais e sintomas da hanseníase (26) . Ademais, estudo realizado em centros de referência em hanseníase de três estados, São Paulo, Mato Grosso e Mato Grosso de Sul (Brasil) mostrou que, além de não reconhecerem a gravidade dos sinais e sintomas, o atraso no diagnóstico esteve associado ao erro de diagnóstico (23) .…”