Burden of leprosy-related disability: results of a population survey in two states in India

Abstract

Objective: To assess the disability burden, in India, due to leprosy. Methods: A survey was conducted using multistage cluster random sampling in eight districts of India; four in U.P. (high endemic) and four in Haryana (low endemic). 804,534 people were examined using physical examination. All the cases suspected by field staff were examined by PHC medical officers or district medical/leprosy officer to confirm the diagnosis for treatment at a nearby health facility. Prevalence per 100,000 was estimated and 𝜒2 test of significance was used to compare proportions. Results: This survey suggested that the prevalence of disability in India was 31.9 per 100,000 population. This was 47.3 (95% CI: 42.0–52.7) per 100,000 population in Uttar Pradesh and 16.8 per 100,000 population (95% CI: 13.6–20.1) in Haryana. The percentage of disabled among new active leprosy cases was found to be 15.8%; 17.7% in Haryana and 15.2% in Uttar Pradesh. The percentage of disabled among new active cases appeared to increase with age (Figure 1), touching zero level at young age of under 10 years and then slowly increasing to a maximum of 34.4% in ages of beyond 60 years; 24% of males with active leprosy were disabled, significantly higher (𝜒2 = 18.2, P < 0.0001) than 7.0% among females, however, this was not significantly different in rural compared to urban areas (18.3% vs. 12.0%, 𝜒2 = 2.3, P = 0.13). The Grade 2 disability rate alone among new leprosy cases was found to be much higher 10.7% (38/355) than 1.8% as reported in the registered data of India 2008–2009. Conclusion: The study suggests that the prevalence of disability is 31.9 per 100,000 population (95% CI: 27.7–36.3) across the two states together and the percentage of disabled among new active leprosy cases was 15.8%. Although Grade 1 disability is not reported in the programme routinely, the rate of new cases with Grade 2 disability found in this survey suggests that the actual rates may be as much as 5.9 to 14.5 times the figure reported in Government data.