Recognising the first visible signs of leprosy and late case detection in a low endemic area of Benin

Although Benin reports fewer than 100 new leprosy cases per year, 47–54% of those notified between 2022 and 2025 had grade 2 disability (G2D) at diagnosis. We examined whether affected individuals and their neighbours recognised the disease by its first recognisable sign, a persistent skin patch with loss or alteration of sensation, or by its perceived late consequences. An analytical cross-sectional study was conducted in the Plateau and Zou departments of Benin among 175 people with multibacillary leprosy (64.1% of 273 multibacillary cases registered there in 2013–2023; 89 paucibacillary cases registered over the same period, 24.6% of the 362 registered cases, were not eligible) and 746 residents randomly selected within 100 m of the patients’ homes. Because the diagnosis was never disclosed, residents were analysed as members of endemic rural communities rather than as traced contacts, with no claim of representativeness. Recognition of this sign was compared with the perception of late consequences, and associations with G2D were examined using logistic regression. Among residents, 66.9% had heard of leprosy. Among those aware, 62.5% cited death, whereas the patch with altered sensation (45.5%) and disability or impairment (47.5%) were cited at indistinguishable rates; across all residents, only 30.4% could name this early sign. G2D was recorded in 33.7% of affected individuals: 19.4% of those presenting with a patch, 50.0% with sensory loss and 80.0% with visible disability. Compared with presentation for a patch, presentation for sensory loss was associated with higher odds of G2D (adjusted odds ratio (aOR) 3.85, 95% confidence interval (CI) 1.64–9.05). No difference was observed between actively and passively detected cases (36.1% versus 33.1%; OR 1.14, 95% CI 0.53–2.46), a comparison limited by only 36 active cases. In principle, 96.4% of residents would accept preventive medication; however, acceptance fell to 73.9% once distance, time and side effects were taken into account. In these low-endemic rural communities, leprosy was more evident through its perceived late consequences than its initial manifestations, and disability at diagnosis tracked the stage at which patients entered care. The findings support communication centred on persistent patches with altered sensation, reinforced recognition skills among first-line workers, and integration of education with case finding and contact-based prevention. The observational design precludes causal inference.