Household costs of leprosy reactions (ENL) in rural India.

BACKGROUND: Erythema nodosum leprosum (ENL) is a common immune-mediated complication of lepromatous (LL) and borderline lepromatous (BL) leprosy. Most patients experience chronic or multiple acute ENL over many years during an economically active period of their lives. Understanding the economic burden of ENL is essential to provide effective patient support, yet this area has not been investigated. METHODS: Ninety-one patients with LL or BL leprosy attending a leprosy hospital in Purulia district of West Bengal, India, were interviewed using a structured questionnaire. Cases (n = 53) were identified as those who had one or more episodes of ENL within the last 3 years. Controls (n = 38) had LL or BL leprosy but no history of ENL. Data were collected on household income, direct and indirect costs, and coping strategies. FINDINGS: The total household cost was Rs 1543 per month or 27.9% (IQR 13.2-52.6) of monthly household income for cases, and Rs 237 per month or 4.9% (IQR 1.7-13.4) of monthly household income for controls. Indirect costs accounted for 65% of total household costs for cases. Direct costs accounted for the remaining 35% of household costs, and resulted almost entirely from treatment-seeking in the private sector. Total household costs exceeded 40% of household income for 37.7% of cases (n = 20) and 2.6% of controls (n = 1) [1 USD = 59 INR]. INTERPRETATION: Households affected by ENL face significant economic burden and are at risk of being pushed further into poverty. Health policy should acknowledge the importance of private sector provision and the significant contribution to total household costs of lost productivity (indirect cost). Further work is needed to explore this area and identify solutions.

Assessment of needs and quality care issues of women with leprosy.

OBJECTIVES: Leprosy causes not just physical but psychosocial and economic problems which are further magnified in women due to gender disadvantages especially in developing countries. In order to determine the needs and quality care issues of women leprosy patients attending a hospital/health care facility, a research project was done. DESIGN: All women leprosy patients attending a Leprosy Referral Hospital in Kolkata, India during 2006 were interviewed in depth and clinically assessed, using a standardised proforma. FINDINGS: Of 104 women studied, half below 40 years of age and 70% above 40 years, had visible disability, and some had diabetes, low back pain etc. Nearly 60% preferred to hide their disease but even so, some had social problems. Most women delayed going to hospital, until their husband/guardian felt it was necessary. They had to complete their household chores before setting out for the hospital, and after their return. A considerable amount of time was spent waiting at various service points which conflicted with their domestic work, and lowered their social worth if they were away too long. This de-motivated them from visiting hospitals, even for follow up visits. Medical advice given--such as avoiding prolonged walking and standing, working with hot utensils etc., was not practical. CONCLUSION: Hospitals can do much to address the needs of women leprosy patients and. provide quality services. National programmes should give a higher priority to offering culturally acceptable health education to promote early reporting.