Late diagnosis of leprosy in the Netherlands: a medical-anthropological study from a patient and healthcare provider perspective

Introduction Late diagnosis of leprosy is associated with preventable neuropathic sequelae. We assessed patient- and physician-related determinants of delay among leprosy patients under care at two academic hospitals in the Netherlands, and provide recommendations for timely management of leprosy patients in a non-endemic setting. Methods From 2005–2015, we recruited leprosy patients from two dermatological referral centres. We mapped disease trajectories based on patient files and in-depth interviews. We distinguished three types of delay: patient delay (>12 months between observing first leprosy-associated symptoms and first consultation), diagnostic delay (>3 months between first consultation and diagnosis), and treatment delay (>2 weeks between diagnosis and start of treatment). We performed univariate logistic regression to assess factors associated with delay. We approached physicians of participating patients for in-depth interviews on their knowledge, experience with leprosy, and the reasons for delayed diagnoses. Results We included 42 patients and 27 physicians. The median pre-consultation period lasted 6 months (2 weeks–252 months); the median diagnostic period lasted 15 months (<1 month to 16 years). Patient delay occurred in 15 patients (36%), diagnostic delay in 29 patients (69%), and treatment delay in 4 (10%). Patient’s gender, ethnic or cultural background, education level and type of leprosy were associated with diagnostic delay. Lack of knowledge of, and interest in, leprosy and leprosy’s complex clinical picture contributed to diagnostic delay. Conclusion Late diagnosis of leprosy is common in the Netherlands and, for the most part, attributable to diagnostic delay. We recommend disease awareness campaigns, in particular among dermatologists, neurologists, and medical students.