The disabling consequences of Mycetoma

Mycetoma is a neglected tropical disease endemic in tropical and subtropical countries, particularly Sudan. The disease is characterised by the triad of painless subcutaneous mass, multiple sinuses and discharge that contain grains. It is a chronic, debilitating disease most commonly affecting the feet or hands and leads to substantial morbidity, loss of function and even amputation. It predominantly affects poor, rural populations and patients typically present late with advanced disease and complications. In this descriptive cross-sectional study, we characterise the disabling consequences of mycetoma. The study included 300 patients; 228 (76%) male and 72 (24%) female with confirmed mycetoma seen at the Mycetoma Research Centre, University of Khartoum, Sudan in the period May 2016 and January 2017. The study design was based upon the International Classification of Functioning, Disability and Health, examining the impact of mycetoma on eight life domains. Our major finding is that mycetoma is a significantly disabling disease. Over 60% of the study population (181 patients) had moderate impairment or difficulty in at least one domain variable. The important disability was mobility impairment and walking difficulty that was reported in 119 patients (39.7%). There was significant pain associated with mycetoma lesions in 103 patients (34%), challenging the traditional view of mycetoma as a painless disease. The economic burden was also found to be substantial, with 126 patients (46.7%) reporting barriers to their ability to sustain themselves. This is the first study evaluating the disabling consequences of mycetoma and shows clear areas for intervention and further research. Options for mitigating social and economic impacts include routine integration of analgesia and physiotherapy into treatment protocols, and adapting educational provision and working practices based on disability assessment. Our data show that mycetoma is a public health issue with direct implications on quality of life.Author summary: Mycetoma is a neglected tropical disease endemic in many tropical and subtropical countries affecting poor, rural populations. It commonly affects the feet or hands and leads to substantial chronic morbidity, loss of function and disability. The disabling consequences of mycetoma have not been studied before. In this study we interviewed 300 patients and asked them to what extent mycetoma has affected their lives across several functional domains. We looked at bodily function, mobility, self-care, domestic activities, interpersonal interactions and relationships, education, economic status, and community, social and civic life. We found that mycetoma causes significant disability and pain. It also causes a significant financial burden to patients, interfering with their ability to be economically self-sufficient and to gain remunerative employment. We also found that mycetoma prevents the attainment of education. To overcome mycetoma-related disability we recommend integrating analgesia and physiotherapy into clinical services, adapting educational provision and working practices and early case detection and treatment to avoid the disease disabling consequences.