Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India

The roles of literacy and gender in enhancing help seeking behaviour in leprosy need further research in order to maximize the effectiveness of health education programmes. A study on leprosy knowledge and attitudes was carried out in Uttar Pradesh, one of the hyper endemic states for leprosy in north India, on a random sample of 130 leprosy patients, 120 non-leprosy patients, and 150 community members. A questionnaire was prepared, tested and administered in Hindi, the local language, by a qualified interviewer. Statistical analyses were done in each group by gender and literacy, and compared. Almost everyone in the three groups knew of leprosy, but only a larger proportion of leprosy patients (60%) mentioned anaesthetic patch, as compared to about 20% or less in the other groups. A vast majority in all groups mentioned bad blood, or divine curse as the cause. Even among leprosy patients, less than 10% of illiterates and only about 40% of literates cited infection as the cause of leprosy. Literates had a better, though still quite a poor knowledge on the symptoms as well as the causation of leprosy. However, almost all stated that leprosy was curable, though they couldn't mention MDT specifically. They felt that not all patients need have deformity. About 20-30% of the leprosy affected, but nearly 50-60% in the other groups stated that there was discrimination. Nearly 70% felt that leprosy affected social participation, over 90% attributing this to adverse social stigma. Multivariate analyses, adjusted for sex, confirmed the significant association of literacy with both knowledge and attitudes. In the light of massive health education and IEC campaigns, the findings from this study are disappointing. Adult literacy programmes combined with more innovative focused approaches to suit various target audiences can impact knowledge and attitudes better.