Exploring the Pathways of Leprosy Patients from Their Communities to a Diagnosis in the Districts of Mayuge, Yumbe and Kasese-Uganda
Background: Leprosy is known to cause disability that leads to severe outcomes like stigma, discrimination, mental health problems and participation restriction. Furthermore, in cases of infectious leprosy, longer delays increase the risk for the spread of the disease. Despite being preventable and curable, a significant proportion of new leprosy patients (39%) in 2019 had grade 2 (Described as Visible disability) at the time of diagnosis signifying late presentation. The aim of this study was to describe patient journeys from first symptoms suggestive of leprosy to a diagnosis and individual and community level factors associated with health seeking behavior of leprosy patients.
Methods: This was a cross-sectional explorative study implemented in Kasese, Mayuge and Yumbe districts .A structured questionnaire was used to collect quantitative data. Qualitative assessment included patients, family members, health workers, voluntary health teams and the district health team. Descriptive statistics were presented in terms of percentages, frequency tables, pie Charts and graphs for easy interpretation and discussion.
Results: The results indicate that 53% of the respondents identified as female. The median age of the respondents being 34 years, with a range of 1 to 76 years (Mean: 44.7, Mode: 65, Standard-Deviation: 19.6, Kurtosis: −0.6). The most common first symptom noticed by respondents was skin lesions (65%) followed by deformities (18%) (P value = 0.05%) occurring mostly in the feet (P-value = 0.48). Majority (52%) of the patients had taken more than 24 months (SD 18.72 OR 2.75) for a diagnosis to be made with a maximum delay of over 60 months. The most common cause of delay in seeking health care was lack of knowledge on leprosy (P value=<0.05) and inaccessibility of the health facilities (p value =< 0.05) due to long distances and poor means of transport. The first symptom recognized was mainly skin lesions (P value = 0.01) followed by deformities (P value = 0.06) first noticed by the patients (35%) followed by family members (35%). In regard to perceived causes and modes of transmission, the community’s understanding of leprosy was linked to cultural and spiritual beliefs, associating it with curses from ancestors or gods. Other beliefs were that leprosy is hereditary and that it can be caused by witchcraft. Stigma caused humiliation and emotional distress and extended to family members and caregivers, leading to discrimination.
Conclusions: There was a delay of 2 years in seeking health care for the majority of the patients. Key barriers to early diagnosis were lack of knowledge and infrastructure. Community sensitization and strengthening capacity building are needed to achieve early diagnosis of leprosy and proper management.