Dehabilitation in the era of elimination and rehabilitation: a study of 100 leprosy patients from a tertiary care hospital in India

Objectives: To study the clinical profile of leprosy patients; to assess dehabilitation in leprosy patients and to study the factors affecting dehabilitation. Design: A cross-sectional questionnaire-based study was carried out on 100 leprosy patients visiting the All India Institute of Medical Sciences (AIIMS), New Delhi between February 2009 and February 2010. Demographic and clinical data were collected and subjects were administered the 52-item Anandaraj Dehabilitation scale which measures the negative impact of leprosy on family relationships, vocational condition, social interaction and self-esteem.

Results: The mean patient age was 30.9 years, 81% were males, 51% were at the lepromatous end of the spectrum, 87% had multibacillary leprosy, 22% each had Type 1 and Type 2 reactions, 22% had Grade 1 disability and 39% had Grade 2 disability. The mean duration of symptoms before diagnosis was 20 months. On the Anandaraj scale, 23% had high levels of dehabilitation; on an average, scores were in the range of medium level dehabilitation. Nearly 80% of patients avoided meeting friends, one-third hid the diagnosis from their families and worried about losing their jobs due to the disease, while around a quarter avoided sexual relations, used separate utensils and avoided touching children. Over 40% of unmarried patients faced matrimonial difficulty due to leprosy. Anxiety and guilt were common and incidence of suicidal ideas was much higher than the lifetime incidence in general population. Lack of education, Type 2 reactions, Grade 2 disability and lower age were predictors of greater dehabilitation.

Conclusions: Dehabilitation of leprosy patients continues in this post-elimination era of rehabilitation. A large segment of preventable disability and resultant dehabilitation is likely being missed. There is an urgent need for corrective and preventive measures.