Estimating cancer incidence in Uganda: a feasibility study for periodic cancer surveillance research in resource limited settings

BACKGROUND: Population based cancer registries (PBCRs) are accepted as the gold standard for estimating cancer incidence in any population. However, only 15% of the world’s population is covered by high quality cancer registries with coverage as low as 1.9% in settings such as Africa. This study was conducted to assess the operational feasibility of estimating cancer incidence using a retrospective “catchment population” approach in Uganda. METHODS: A retrospective population study was conducted in 2018 to identify all newly diagnosed cancer cases between 2013 and 2017 in Mbarara district. Data were extracted from the medical records of health facilities within Mbarara and from national and regional centres that provide cancer care services. Cases were coded according to the International Classification of Diseases for Oncology (ICD-0-03). Data was analysed using CanReg5 and Excel. RESULTS: We sought to collect data from 30 health facilities serving Mbarara district, southwestern Uganda. Twenty-eight sources (93%) provided approval within the set period of two months. Among the twenty-eight sources, two were excluded, as they did not record addresses for cancer cases, leaving 26 sources (87%) valid for data collection. While 13% of the sources charged a fee, ranging from $30 to $100, administrative clearance and approval was at no cost in most (87%) data sources. This study registered 1,258 new cancer cases in Mbarara district. Of the registered cases, 65.4% had a morphologically verified diagnosis indicating relatively good quality of data. The Age-Standardised Incidence Rates for all cancers combined were 109.9 and 91.9 per 100,000 in males and females, respectively. In males, the most commonly diagnosed cancers were prostate, oesophagus, stomach, Kaposi’s sarcoma and liver. In females, the most common malignancies were cervix uteri, breast, stomach, liver and ovary. Approximately, 1 in 8 males and 1 in 10 females would develop cancer in Mbarara before the age of 75 years. CONCLUSION: Estimating cancer incidence using a retrospective cohort design and a “catchment population approach” is feasible in Uganda. Periodic studies using this approach are potentially a precious resource for producing quality cancer data in settings where PBCRs are scarce. This could supplement PBCR data to provide a detailed and comprehensive picture of the cancer burden over time, facilitating the direction of cancer control efforts in resource-limited countries.