Impact of Community-Based Lymphedema Management on Perceived Disability among Patients with Lymphatic Filariasis in Orissa State, India

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Abstract
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. 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. 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. Lymphatic filariasis (LF) is the world's second-leading cause of disability and causes limb lymphedema and elephantiasis in up to 15 million people and lymphedema or hydrocele in over 40 million people, worldwide. A massive global effort has been undertaken to eliminate LF as a public health problem. LF elimination is based on two pillars: (1) interruption of transmission and (2) treatment of clinical disease among those already affected. The Indian NGO, Church's Auxiliary for Social Action (CASA), has been providing community-based treatment of lymphedema in Khurda District, Orissa State, India, since 2007. We evaluated the impact of this treatment program on the participating patients' perceived disability using the WHO Disability Assessment Schedule II (WHO-DAS II). After two years of enrollment in the program, patients had significantly lower levels of perceived disability. We found that being employed and time enrolled in the program were associated with significant reductions in disability scores. Compared to baseline, patients enrolled in the program for at least 12 months reported 2.5 fewer days of work lost in the previous 30 days due to their lymphedema. These findings indicate that participation in a community-based lymphedema management program can reduce patients' disability and prevent days of work lost due to lymphedema.

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