Evaluating the Burden of Lymphedema Due to Lymphatic Filariasis in 2005 in Khurda District, Odisha State, India.

BACKGROUND: Over 1.1 billion people worldwide are at risk for lymphatic filariasis (LF), and the global burden of LF-associated lymphedema is estimated at 16 million affected people, yet country-specific estimates are poor. METHODOLOGY/PRINCIPAL FINDINGS: A house-to-house morbidity census was conducted to assess the burden and severity of lymphedema in a population of 1,298,576 persons living in the LF-endemic district of Khurda in Odisha State, India. The burden of lymphedema in Khurda is widespread geographically, and 1.3% (17,036) of the total population report lymphedema. 51.3% of the patients reporting lymphedema were female, mean age 49.4 years (1-99). Early lymphedema (Dreyer stages 1 & 2) was reported in two-thirds of the patients. Poisson regression analysis was conducted in order to determine risk factors for advanced lymphedema (Dreyer stages 4-7). Increasing age was significantly associated with advanced lymphedema, and persons 70 years and older had a prevalence three times greater than individuals ages 15-29 (aPR: 3.21, 95% CI 2.45, 4.21). The number of adenolymphangitis (ADL) episodes reported in the previous year was also significantly associated with advanced lymphedema (aPR 4.65, 95% CI 2.97-7.30). This analysis is one of the first to look at potential risk factors for advanced lymphedema using morbidity census data from an entire district in Odisha State, India. SIGNIFICANCE: These data highlight the magnitude of lymphedema in LF-endemic areas and emphasize the need to develop robust estimates of numbers of individuals with lymphedema in order to identify the extent of lymphedema management services needed in these regions.

Economic Costs and Benefits of a Community-Based Lymphedema Management Program for Lymphatic Filariasis in Odisha State, India.

Lymphatic filariasis afflicts 68 million people in 73 countries, including 17 million persons living with chronic lymphedema. The Global Programme to Eliminate Lymphatic Filariasis aims to stop new infections and to provide care for persons already affected, but morbidity management programs have been initiated in only 24 endemic countries. We examine the economic costs and benefits of alleviating chronic lymphedema and its effects through a simple limb-care program. For Khurda District, Odisha State, India, we estimated lifetime medical costs and earnings losses due to chronic lymphedema and acute dermatolymphangioadenitis (ADLA) with and without a community-based limb-care program. The program would reduce economic costs of lymphedema and ADLA over 60 years by 55%. Savings of US$1,648 for each affected person in the workforce are equivalent to 1,258 days of labor. Per-person savings are more than 130 times the per-person cost of the program. Chronic lymphedema and ADLA impose a substantial physical and economic burden on the population in filariasis-endemic areas. Low-cost programs for lymphedema management based on limb washing and topical medication for infection are effective in reducing the number of ADLA episodes and stopping progression of disabling and disfiguring lymphedema. With reduced disability, people are able to work longer hours, more days per year, and in more strenuous, higher-paying jobs, resulting in an important economic benefit to themselves, their families, and their communities. Mitigating the severity of lymphedema and ADLA also reduces out-of-pocket medical expense.

Experiences of a Community-Based Lymphedema Management Program for Lymphatic Filariasis in Odisha State, India: An Analysis of Focus Group Discussions with Patients, Families, Community Members and Program Volunteers.

BACKGROUND: Globally 68 million people are infected with lymphatic filariasis (LF), 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema. METHODOLOGY/PRINCIPAL FINDINGS: Focus groups were held with patients (eight groups, separated by gender), their family members (eight groups), community members (four groups) and program volunteers (four groups) who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector. CONCLUSIONS/SIGNIFICANCE: Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.

Impact of a community-based lymphedema management program on episodes of Adenolymphangitis (ADLA) and lymphedema progression--Odisha State, India.

BACKGROUND: Lymphedema management programs have been shown to decrease episodes of adenolymphangitis (ADLA), but the impact on lymphedema progression and of program compliance have not been thoroughly explored. Our objectives were to determine the rate of ADLA episodes and lymphedema progression over time for patients enrolled in a community-based lymphedema management program. We explored the association between program compliance and ADLA episodes as well as lymphedema progression. METHODOLOGY/PRINCIPAL FINDINGS: A lymphedema management program was implemented in Odisha State, India from 2007-2010 by the non-governmental organization, Church's Auxiliary for Social Action, in consultation with the Centers for Disease Control and Prevention. A cohort of patients was followed over 24 months. The crude 30-day rate of ADLA episodes decreased from 0.35 episodes per person-month at baseline to 0.23 at 24 months. Over the study period, the percentage of patients who progressed to more severe lymphedema decreased (P-value  = 0.0004), while those whose lymphedema regressed increased over time (P-value<0.0001). Overall compliance to lymphedema management, lagged one time point, appeared to have little to no association with the frequency of ADLA episodes among those without entry lesions (RR = 0.87 (0.69, 1.10)) and was associated with an increased rate (RR = 1.44 (1.11, 1.86)) among those with entry lesions. Lagging compliance two time points, it was associated with a decrease in the rate of ADLA episodes among those with entry lesions (RR = 0.77 (95% CI: 0.59, 0.99)) and was somewhat associated among those without entry lesions (RR = 0.83 (95% CI: 0.64, 1.06)). Compliance to soap was associated with a decreased rate of ADLA episodes among those without inter-digital entry lesions. CONCLUSIONS/SIGNIFICANCE: These results indicate that a community-based lymphedema management program is beneficial for lymphedema patients for both ADLA episodes and lymphedema. It is one of the first studies to demonstrate an association between program compliance and rate of ADLA episodes.

Impact of community-based lymphedema management on perceived disability among patients with lymphatic filariasis in Orissa State, India.

BACKGROUND: Lymphatic filariasis (LF) infects approximately 120 million people worldwide. As many as 40 million have symptoms of LF disease, including lymphedema, elephantiasis, and hydrocele. India constitutes approximately 45% of the world's burden of LF. The Indian NGO Church's Auxiliary for Social Action (CASA) has been conducting a community-based lymphedema management program in Orissa State since 2007 that aims to reduce the morbidity associated with lymphedema and elephantiasis. The objective of this analysis is to evaluate the effects of this program on lymphedema patients' perceived disability. METHODOLOGY/PRINCIPAL FINDINGS: For this prospective cohort study, 370 patients ≥14 years of age, who reported lymphedema lasting more than three months in one or both legs, were recruited from villages in the Bolagarh sub-district, Khurda District, Orissa, India. The World Health Organization Disability Assessment Schedule II was administered to participants at baseline (July, 2009), and then at regular intervals through 24 months (July, 2011), to assess patients' perceived disability. Disability scores decreased significantly (p<0.0001) from baseline to 24 months. Multivariable analysis using mixed effects modeling found that employment and time in the program were significantly associated with lower disability scores after two years of program involvement. Older age, female gender, the presence of other chronic health conditions, moderate (Stage 3) or advanced (Stage 4-7) lymphedema, reporting an adenolymphangitis (ADL) episode during the previous 30 days, and the presence of inter-digital lesions were associated with higher disability scores. Patients with moderate or advanced lymphedema experienced greater improvements in perceived disability over time. Patients participating in the program for at least 12 months also reported losing 2.5 fewer work days per month (p<0.001) due to their lymphedema, compared to baseline. SIGNIFICANCE: These results indicate that community-based lymphedema management programs can reduce disability and prevent days of work lost. These effects were sustained over a 24 month period.

Increasing compliance with mass drug administration programs for lymphatic filariasis in India through education and lymphedema management programs.

BACKGROUND: Nearly 45% of people living at risk for lymphatic filariasis (LF) worldwide live in India. India has faced challenges obtaining the needed levels of compliance with its mass drug administration (MDA) program to interrupt LF transmission, which utilizes diethylcarbamazine (DEC) or DEC plus albendazole. Previously identified predictors of and barriers to compliance with the MDA program were used to refine a pre-MDA educational campaign. The objectives of this study were to assess the impact of these refinements and of a lymphedema morbidity management program on MDA compliance. METHODS/PRINCIPAL FINDINGS: A randomized, 30-cluster survey was performed in each of 3 areas: the community-based pre-MDA education plus community-based lymphedema management education (Com-MDA+LM) area, the community-based pre-MDA education (Com-MDA) area, and the Indian standard pre-MDA education (MDA-only) area. Compliance with the MDA program was 90.2% in Com-MDA+LM, 75.0% in Com-MDA, and 52.9% in the MDA-only areas (p<0.0001). Identified barriers to adherence included: 1) fear of side effects and 2) lack of recognition of one's personal benefit from adherence. Multivariable predictors of adherence amenable to educational intervention were: 1) knowing about the MDA in advance of its occurrence, 2) knowing everyone is at risk for LF, 3) knowing that the MDA was for LF, and 4) knowing at least one component of the lymphedema management techniques taught in the lymphedema management program. CONCLUSIONS/SIGNIFICANCE: This study confirmed previously identified predictors of and barriers to compliance with India's MDA program for LF. More importantly, it showed that targeting these predictors and barriers in a timely and clear pre-MDA educational campaign can increase compliance with MDA programs, and it demonstrated, for the first time, that lymphedema management programs may also increase compliance with MDA programs.