Care-seeking among hepatocellular carcinoma patients in Uganda: health system navigation and its impact on diagnosis and survival in a prospective case-cohort study

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Background: Hepatocellular carcinoma (HCC) patients are often diagnosed with advanced-stage disease. We aimed to identify care-seeking patterns, assess correlates of earlier diagnosis and determine the impact of diagnostic delay on mortality among HCC patients. Methods: Cross-sectional study, enrolled (March 2015 to August 2020), HCC patients in three Ugandan tertiary care hospitals. Time to HCC diagnosis was the duration between the onset of the first reported symptom(s) and ultrasound-based diagnosis. We used negative binomial regression to estimate incidence rate ratios (IRRs) for correlates of time to HCC diagnosis and Kaplan-Meier survival curves for time-to-death analysis. Results: Of 651 HCC patients, 442 (67.9%) were male, median age 43 years (IQR 32-56). Majority 97.7% sought healthcare for HCC-related symptoms prior to enrolment; 248 (38.1%) once and 388 (59.6%) two or more times. These included public facilities (442, 69.4%), private facilities (493, 77.5%) and traditional and complementary medicine practitioners (140, 22%); 45 patients (6.9%) visited all three types at least once. Median time to HCC diagnosis was 90 days (IQR 58-173). Shorter time to HCC diagnosis was associated with male sex (IRR 0.84; 95% CI 0.71 to 0.99; p=0.04), chronic hepatitis B (IRR 0.78; 95% CI 0.66 to 0.93), HIV (IRR 0.64; 95% CI 0.51 to 0.79) and having at least secondary education (IRR 0.83; 95% CI 0.69 to 0.99). Longer time to HCC diagnosis was associated with age ≥50 years (IRR 1.29; 95% CI 1.02 to 1.64) and attending multiple facilities (IRR 2.20; 95% CI 1.54 to 3.00). Time to HCC diagnosis was not significantly associated with survival. Conclusion: Diagnostic pathways for HCC in Uganda are characterised by repeated healthcare visits across multiple provider types. Strategies to improve outcomes should promote timely care-seeking, strengthen surveillance of high-risk individuals and improve diagnostic capacity and coordination of care within the pluralistic healthcare system.

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