Prolonged delays in leprosy case detection in a leprosy hot spot setting in Eastern Ethiopia

Background: Leprosy or Hansen’s disease is known to cause disability and disfigurement. A delay in case detection of leprosy patients can lead to severe outcomes. In Ethiopia, the disability rates caused by leprosy among new cases are relatively high compared to other endemic countries. This suggests the existence of hidden leprosy cases in the community and a delay in timely detection. To reduce disability rates, it is crucial to identify the factors associated with this delay. This study aimed to determine the extent of delay in case detection among leprosy cases in Eastern Ethiopia. Methods: This cross-sectional explorative study was conducted in January and February 2019 among 100 leprosy patients diagnosed ≤6 months prior to inclusion. A structured questionnaire was used to collect data, including the initial onset of symptoms, and the reasons for delayed diagnosis. Descriptive statistics, including percentages and medians, were used to describe the case detection delay. Logistic regression analysis was carried out to evaluate the predictors of delay in case detection of >12 months. Findings: The median age of patients was 35 years, with a range of 7 to 72 years. The majority were male (80%) and rural residents (90%). The median delay in case detection was 12 months (interquartile range 10–36 months) among the included patients. The mean delay in case detection was 22 months, with a maximum delay of 96 months. The overall prevalence of disability among the study population was 42% (12% grade I and 30% grade II). Fear of stigma (p = 0.018) and experiencing painless symptoms (p = 0.018) were highly associated with a delay in case detection of >12 months. Conclusions: Being afraid of stigma and having painless symptoms, which are often misinterpreted as non-alarming at the onset of the disease, were associated with a delay in case detection. This study showed the need to increase knowledge on early symptoms of leprosy among affected communities. Furthermore, it is important to support initiatives that reduce leprosy related stigma and promote health worker training in leprosy control activities. Author summary: Leprosy, also called Hansen’s disease, is a chronic infectious disease that may result in devastating disabilities. The disability rate among new leprosy patients in Ethiopia is high compared to other countries. A delay in case detection is a major factor contributing to the development of disability. Late diagnosis also fosters ongoing transmission, increasing the incidence of the disease. We aimed to determine the extent of the detection delay and find the reasons for this delay in eastern Ethiopian districts, endemic for leprosy. One hundred leprosy patients who recently started multi-drug therapy were included in the study. The median detection delay was one year among all patients. About half of the patients had sought treatment from health institutions within one year after the onset of their first symptoms. Longer delays among leprosy patients were associated with a fear of stigma and painless symptoms at an early stage of the disease. This indicates that it is vital to improve community knowledge of leprosy symptoms and to take initiatives that reduce stigma. This should improve health-seeking behaviour and may prevent the development of disability as well as halt transmission.