Evaluating the cost of self-care: Impact of enhanced morbidity management protocol on people living with lymphatic filariasis in Bangladesh.

BACKGROUND: Lymphatic filariasis (LF) causes chronic lymphoedema requiring long-term self-care, often at personal cost. In post-elimination settings such as Bangladesh, understanding the financial burden of self-care is critical for sustaining morbidity management and disability prevention (MMDP). This study evaluated self-care costs and the impact of an enhanced morbidity management protocol among people affected by filarial lymphoedema in Bangladesh.

METHODOLOGY: A longitudinal cohort study was conducted in Lalmonirhat and Thakurgaon districts (2020-2021). People affected by mild, moderate, and severe lymphoedema (n = 290) were assessed at baseline, trained in an enhanced self-care protocol, and assessed at a 3-month follow-up and a final follow-up conducted at 6 months in Lalmonirhat and 9 months in Thakurgaon. Data were collected on clinical characteristics (lymphoedema stage, acute attacks, pain), self-care items (soap, cream, pain relief), related costs, and adherence.

RESULTS: At baseline, participants with mild (11.2-54.7%), moderate (21.9-39.5%), and severe (23.4-49.3%) lymphoedema were included, reflecting variation across districts. Acute attacks were reported by 62.8-79.6% of participants and severe pain by 40.6-54.6%. Following the intervention, acute attacks decreased to 25.2-35.2% and severe pain to 22.4-28.0% (p < 0.001). Baseline monthly total self-care expenditure ranged from 195.3-215.2 BDT (US$2.29-2.53), with participants with severe lymphoedema incurring significantly higher costs than those with mild disease in both districts (234.3 vs 159.2 BDT in Lalmonirhat and 234.2 vs 172.0 BDT in Thakurgaon; both p < 0.05). Total monthly expenditure remained broadly stable over time, but spending shifted significantly towards soap and cream, while expenditure on pain relief decreased (p < 0.001). Exploratory mixed-effects analyses supported these findings, showing that higher expenditure was independently associated with follow-up time, district and greater baseline lymphoedema severity.

CONCLUSIONS: Enhanced self-care training was associated with reductions in reported acute attacks and pain and changes in spending towards preventive self-care practices but did not eliminate the ongoing financial burden of lymphoedema, particularly for individuals with severe disease. Exploratory adjusted analyses supported the descriptive findings, indicating that expenditure was influenced by follow-up time, district and disease severity. Sustainable MMDP programmes should prioritise equitable access to essential self-care supplies to reduce out-of-pocket costs and support long-term adherence.