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 (Visible disability) at the time of diagnosis signifying late presentation. To achieve early diagnosis of leprosy, there is urgent need for improved knowledge and insights to enhance identification and implementation of innovative health promotion approaches. In this study we describe patient journeys from first symptoms to a diagnosis and individual as well as 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 where all leprosy patients with grade 2(Visible disability) registered from January 2019 up to December 2022 were enrolled. 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. The monthly income for most (85%) patients was below 14 dollars per month. The most common first symptom noticed by respondents was skin lesion (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), belief that health care personnel lack skills to manage leprosy (P value =<0.05) and inaccessibility of the health facilities (p value =<0.05) due to long distance 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, seeing leprosy as a familial curse while others thought it was caused by witchcraft. Stigmatizing terms like "leper" were used to describe affected individuals, causing humiliation and emotional distress. Stigma extended to family members and caregivers, leading to discrimination. Moreover, patients visited multiple health facilities before receiving a proper diagnosis.
Conclusions: In this study, results show a delay of close to 2 years in seeking health care for majority of the patients. Key barriersto early diagnosis included: lack of knowledge, inaccessibility of health facilities, belief that health workers are unskilled to manage leprosy, stigma, discrimination and social-cultural beliefs. Community sensitization, health promotion approaches and strengthening capacity building of health care workers are needed to achieve early diagnosis of leprosy and proper management.