Abstract:
Background: Survival after diagnosis is a fundamental concern in cancer epidemiology. In resource-rich settings,
ambient clinical databases, municipal data and cancer registries make survival estimation in real-world populations
relatively straightforward. In resource-poor settings, given the deficiencies in a variety of health-related data systems, it
is less clear how well we can determine cancer survival from ambient data.
Methods: We addressed this issue in sub-Saharan Africa for Kaposi’s sarcoma (KS), a cancer for which incidence has
exploded with the HIV epidemic but for which survival in the region may be changing with the recent advent of
antiretroviral therapy (ART). From 33 primary care HIV Clinics in Kenya, Uganda, Malawi, Nigeria and Cameroon
participating in the International Epidemiologic Databases to Evaluate AIDS (IeDEA) Consortia in 2009–2012, we
identified 1328 adults with newly diagnosed KS. Patients were evaluated from KS diagnosis until death, transfer to
another facility or database closure.
Results: Nominally, 22 % of patients were estimated to be dead by 2 years, but this estimate was clouded by
45 % cumulative lost to follow-up with unknown vital status by 2 years. After adjustment for site and CD4 count,
age <30 years and male sex were independently associated with becoming lost.
Conclusions: In this community-based sample of patients diagnosed with KS in sub-Saharan Africa, almost half
became lost to follow-up by 2 years. This precluded accurate estimation of survival. Until we either generally
strengthen data systems or implement cancer-specific enhancements (e.g., tracking of the lost) in the region,
insights from cancer epidemiology will be limited
