Abstract
BACKGROUND: The experiences of patients and healthcare providers are fundamental in understanding the patient journey, particularly in the context of neglected diseases affecting rural populations. These insights are crucially important for advancing people-centred, high-quality healthcare and achieving improved health outcomes. Cutaneous leishmaniasis (CL) causes chronic, disfiguring skin lesions leading to a significant burden on the affected communities and the health systems. Our study aims to examine the experiences of people with CL after entering the biomedical healthcare system. We also integrate these findings with our previous work to map the entire CL patient journey in a disease-endemic district in Sri Lanka. METHODS: We conducted a qualitative study in three rural communities with high disease prevalence in the Anuradhapura district, Sri Lanka. We collected data through (1) a participant experience reflection journal (PERJ), (2) post-PERJ interviews and (3) an interview study with healthcare professionals. We analysed data through thematic analysis. RESULTS: Thirty PERJs were completed by individuals with CL, with 25 participating in post-PERJ interviews and 16 healthcare professionals participated in the key informant interviews. Upon entering a biomedical healthcare facility, a person with CL navigated through the stages of clinical suspicion and laboratory diagnosis, receiving treatment and achieving a cure (as clinically confirmed by the treating dermatologist). Although many physicians accurately suspected cases upon initial presentation, some failed to clinically diagnose CL promptly. Some patients experienced prolonged waiting times for their initial consultations with the dermatologist and to receive diagnostic test results. Accessibility issues, travel and meal costs, and competing responsibilities like household work, education, and employment further added to the burden of attending frequent clinic visits for CL. Despite the long and painful nature of the treatment, compliance among people with CL remained satisfactory, with rare reports of treatment failure. For some people, the CL patient journey extends beyond the clinically defined cure, as they continue to live with constant fears, perceived physical impacts associated with the disease, and effects of treatment. CONCLUSIONS: We found that, despite certain positive aspects, the CL patient journey is complex, with substantial and pervasive delays and barriers along with psychosocial impacts that persist beyond clinical cure. Our study findings can inform evidence-based, context-specific interventions to reduce the public health burden of CL in resource-limited settings.