Stigma in leprosy: miles to go!

No disease has been more closely associated with stigma than leprosy such that it has become a metaphor for stigma. Stigma has been difficult to measure and little research has been done on this issue. Stigma reduction has not been an important component of anti-leprosy program. The study was undertaken to measure the stigma associated with leprosy by using P scale which is used for assessing participation restriction of those affected by the disease. This comparative questionnaire based study was carried out in two sets of patients. Two groups of 30 patients each were studied. First group belonged to a Government run Leprosarium and group two from a tertiary care skin and leprosy centre. The study used the Participation (P) scale and data was collected by interviewing the patients. Participation restriction was defined as any score equal to and more than 13. Participation restriction was observed in 27 (90%) cases of group 1while participation restriction was present in only 7 (23.3%) subjects of group 2. It was observed that mean score of participation restriction in group 1 was quite high at 31.9 while it was only 8.3 for group 2. The participation restriction was directly related to the duration of disease and the grade of disability. Longer the duration of disease, greater was the likelihood of restriction. The participation restriction was found to be negatively correlated with the education. Recommendation about prevention of disability would require program about early diagnosis of nerve damage and subsequent action at the patient-family-community level and health care providers.