Access, utilisation and barriers to lymphedema care: A mixed method study in Puducherry, India

Abstract

Lymphatic filariasis (LF) causes chronic conditions such as lymphedema and hydrocele, which require continued care to prevent disease progression and reduce the risk of secondary infections. The delivery and utilisation of lymphedema care services are shaped by various socio-economic and systemic factors. Although India has implemented the strategy of mass drug administration (MDA) across all 345 endemic districts, it still lags in the implementation of morbidity care to affected individuals. Healthcare access and treatment barriers among lymphedema patients are less explored domains. This mixed-methods study aimed to assess healthcare utilization and identify barriers to care among patients with lymphedema in Puducherry, a district that stopped MDA in 2013 and is currently under surveillance. The study involved analysis of patient records from three primary healthcare centres and in-depth interviews with 21 lymphedema patients and six healthcare providers. Data were collected between May and August 2024 and analysed thematically. The findings revealed significant variation in healthcare access and utilization, with urban centres showing higher patient attendance and more consistent distribution of services. While most participants had access to essential supplies and care, some faced challenges due to mobility constraints, and inconsistent service delivery. The implementation of care has often been challenged by staff shortages, difficulties in patient tracking, mobility issues among advanced-stage patients, and insufficient training. Family support emerged as a key factor in helping patients cope with the disease. Strengthening healthcare delivery through enhanced resource allocation, staff training, patient tracking systems, and targeted financial and psychosocial interventions is essential for equitable and effective care for patients. As India works toward LF elimination by 2027, sustained efforts to improve care for lymphedema patients remain crucial, especially in region under post-MDA.