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.

High-resolution disease maps for cancer control in low-resource settings: A spatial analysis of cervical cancer incidence in Kampala, Uganda.

Background: The global burden of cervical cancer is concentrated in low-and middle-income countries (LMICs), with the greatest burden in Africa. Targeting limited resources to populations with the greatest need to maximize impact is essential. The objectives of this study were to geocode cervical cancer data from a population-based cancer registry in Kampala, Uganda, to create high-resolution disease maps for cervical cancer prevention and control planning, and to share lessons learned to optimize efforts in other low-resource settings. Methods: Kampala Cancer Registry records for cervical cancer diagnoses between 2008 and 2015 were updated to include geographies of residence at diagnosis. Population data by age and sex for 2014 was obtained from the Uganda Bureau of Statistics. Indirectly age-standardized incidence ratios were calculated for sub-counties and estimated continuously across the study area using parish level data. Results: Overall, among 1873 records, 89.6% included a valid sub-county and 89.2% included a valid parish name. Maps revealed specific areas of high cervical cancer incidence in the region, with significant variation within sub-counties, highlighting the importance of high-resolution spatial detail. Conclusions: Population-based cancer registry data and geospatial mapping can be used in low-resource settings to support cancer prevention and control efforts, and to create the potential for research examining geographic factors that influence cancer outcomes. It is essential to support LMIC cancer registries to maximize the benefits from the use of limited cancer control resources.

Cervical Cancer in Sub-Saharan Africa: A Multinational Population-Based Cohort Study of Care and Guideline Adherence.

BACKGROUND: Cervical cancer (CC) is the most common female cancer in many countries of sub-Saharan Africa (SSA). We assessed treatment guideline adherence and its association with overall survival (OS). METHODS: Our observational study covered nine population-based cancer registries in eight countries: Benin, Ethiopia, Ivory Coast, Kenya, Mali, Mozambique, Uganda, and Zimbabwe. Random samples of 44-125 patients diagnosed from 2010 to 2016 were selected in each. Cancer-directed therapy (CDT) was evaluated for degree of adherence to National Comprehensive Cancer Network (U.S.) Guidelines. RESULTS: Of 632 patients, 15.8% received CDT with curative potential: 5.2% guideline-adherent, 2.4% with minor deviations, and 8.2% with major deviations. CDT was not documented or was without curative potential in 22%; 15.7% were diagnosed with International Federation of Gynecology and Obstetrics (FIGO) stage IV disease. Adherence was not assessed in 46.9% (no stage or follow-up documented, 11.9%, or records not traced, 35.1%). The largest share of guideline-adherent CDT was observed in Nairobi (49%) and the smallest in Maputo (4%). In patients with FIGO stage I-III disease (n = 190), minor and major guideline deviations were associated with impaired OS (hazard rate ratio [HRR], 1.73; 95% confidence interval [CI], 0.36-8.37; HRR, 1.97; CI, 0.59-6.56, respectively). CDT without curative potential (HRR, 3.88; CI, 1.19-12.71) and no CDT (HRR, 9.43; CI, 3.03-29.33) showed substantially worse survival. CONCLUSION: We found that only one in six patients with cervical cancer in SSA received CDT with curative potential. At least one-fifth and possibly up to two-thirds of women never accessed CDT, despite curable disease, resulting in impaired OS. Investments into more radiotherapy, chemotherapy, and surgical training could change the fatal outcomes of many patients. IMPLICATIONS FOR PRACTICE: Despite evidence-based interventions including guideline-adherent treatment for cervical cancer (CC), there is huge disparity in survival across the globe. This comprehensive multinational population-based registry study aimed to assess the status quo of presentation, treatment guideline adherence, and survival in eight countries. Patients across sub-Saharan Africa present in late stages, and treatment guideline adherence is remarkably low. Both factors were associated with unfavorable survival. This report warns about the inability of most women with cervical cancer in sub-Saharan Africa to access timely and high-quality diagnostic and treatment services, serving as guidance to institutions and policy makers. With regard to clinical practice, there might be cancer-directed treatment options that, although not fully guideline adherent, have relevant survival benefit. Others should perhaps not be chosen even under resource-constrained circumstances.

Stage at diagnosis and survival by stage for the leading childhood cancers in three populations of sub-Saharan Africa.

The lack of accurate population-based information on childhood cancer stage and survival in low-income countries is a barrier to improving childhood cancer outcomes. In our study, data from three population-based registries in sub-Saharan Africa (Abidjan, Harare and Kampala) were examined for children aged under 15. We assessed the feasibility of assigning stage at diagnosis according to Tier 1 of the Toronto Childhood Cancer Stage Guidelines for patients with non-Hodgkin lymphoma [including Burkitt lymphoma (BL)], retinoblastoma and Wilms' tumour. Patients were actively followed-up, allowing calculation of 3-year relative survival by cancer type and registry. Stage-specific observed survival was estimated. The cohort comprised 381 children, of whom half (n = 192, 50%) died from any cause within 3 years of diagnosis. Three-year relative survival varied by malignancy and location and ranged from 17% [95% confidence interval (CI) = 6%-33%] for BL in Harare to 57% (95% CI = 31%-76%) for retinoblastoma in Kampala. Stage was assigned for 83% of patients (n = 317 of 381), with over half having metastatic or advanced disease at diagnosis (n = 166, 52%). Stage was a strong predictor of survival for each malignancy; for example, 3-year observed survival was 88% (95% CI = 68%-96%) and 13% (4%-29%) for localised and advanced BL, respectively (P < .001). These are the first data on stage distribution and stage-specific survival for childhood cancers in Africa. They demonstrate the feasibility of the Toronto Stage Guidelines in a low-resource setting and highlight the value of population-based cancer registries in aiding our understanding of the poor outcomes experienced by this population.

Trends in the incidence of cancer in Kampala, Uganda, 1991 to 2015.

Trends in the incidence of cancer in the population of Kyadondo County, Uganda-which comprises the city of Kampala and a peri-urban hinterland-are presented for a period of 25 years (1991-2015) based on data collected by the Kampala Cancer Registry. Incidence rates have risen overall-age-adjusted rates are some 25% higher in 2011 to 2015 compared with 1991 to 1995. The biggest absolute increases have been in cancers of the prostate, breast and cervix, with rates of some 100% (prostate), 70% (breast) and 45% (cervix) higher in 2010 to 2015 than in 1991 to 1995. There were also increases in the incidence of cancers of the esophagus and colon-rectum (statistically significant in men), while the incidence of liver cancer-the fifth most common in this population-increased until 2007, and subsequently declined. By far the most commonly registered cancer over the 25-year period was Kaposi sarcoma, but the incidence has declined, consistent with the decreasing population-prevalence of HIV. Non-Hodgkin lymphomas, also AIDS-related, increased in incidence until 2006/2007 and then declined-possibly as a result of availability of antiretroviral therapy. The trends reflect the changing lifestyles of this urban African population, as well as the consequences of the epidemic of HIV/AIDS and the availability of treatment with ARVs. At the same time, it highlights the fact that the decreases in cancer of the cervix observed in high and upper-middle income countries are not a consequence of changes in lifestyle, but demand active intervention through screening (and, in the longer term, vaccination).

Survival from childhood cancer in Kampala, Uganda.

Population-based data on survival from childhood cancers in sub-Saharan Africa are sparse. We report data on 221 children with cancer diagnosed between 2010 and 2014 in the population of Kampala, Uganda. Survival for eight of nine children with cancer assessed was below the WHO's global target of 60% (the exception was Hodgkin lymphoma: 86% at 3 years). There was significant (P < .05) decline in survival between 1 and 3 years for Wilms tumour and Kaposi sarcoma (30% and 34% at 3 years, respectively). Survival from Burkitt lymphoma, Wilms tumour and Kaposi sarcoma has not changed compared with results from the 2005-2009 study.

Survival from childhood cancers in Eastern Africa: A population-based registry study.

Cancers occurring in children in Africa are often underdiagnosed, or at best diagnosed late. As a result, survival is poor, even for cancers considered 'curable'. With limited population-level data, understanding the actual burden and survival from childhood cancers in Africa is difficult. In this study, we aimed at providing survival estimates for the most common types of cancers affecting children aged 0-14 years, in three population-based Eastern African registries; Harare, Zimbabwe (Kaposi sarcoma, Wilms tumour (WT), non-Hodgkin lymphoma (NHL), retinoblastoma, and acute lymphocytic leukaemia (ALL)), Kampala, Uganda (Burkitt lymphoma, Kaposi sarcoma, WT, and retinoblastoma), and Nairobi, Kenya (ALL, retinoblastoma, WT, Burkitt lymphoma, and Hodgkin lymphoma). We included cases diagnosed within the years 1998-2009 and followed up till the end of 2011. We estimated the observed and relative survival at 1, 3, and 5 years after diagnosis. We studied 627 individual patient records. Median follow-up ranged from 2.2 months for children with Kaposi sarcoma in Harare to 30.2 months for children with ALL in Nairobi. The proportion of children lost to follow-up was highest in the first year after diagnosis. In Harare and Kampala, the 5-year relative survival was <46% for all cancer types. The 5-year relative survival was best for children in Nairobi, though with wider confidence intervals. Survival from childhood cancers in Africa is still poor, even for cancers with good prognosis and potential for cure. Supporting cancer detection, treatment, and registration activities could help improve survival chances for children with cancers in Africa.

Uganda experience-Using cost assessment of an established registry to project resources required to expand cancer registration.

BACKGROUND: The objectives of this study are (1) to estimate the cost of operating the Kampala Cancer Registry (KCR) and (2) to use cost data from the KCR to project the resource needs and cost of expanding and sustaining cancer registration in Uganda, focusing on the recently established Gulu Cancer Registry (GCR) in rural Northern Uganda. METHODS: We used Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to estimate the KCR's activity-based cost for 2014. We grouped the registry activities into fixed cost, variable core cost, and variable other cost activities. After a comparison KCR and GCR characteristics, we used the cost of the KCR to project the likely ongoing costs for the new GCR. RESULTS: The KCR incurred 42% of its expenditures in fixed cost activities, 40% for variable core cost activities, and the remaining 18% for variable other cost activities. The total cost per case registered was 28,201 Ugandan shillings (approximately US $10 in 2014) to collect and report cases using a combination of passive and active cancer data collection approaches. The GCR performs only active data collection, and covers a much larger area, but serves a smaller population compared to the KCR. CONCLUSION: After identifying many differences between KCR and GCR that could potentially affect the cost of registration, our best estimate is that the GCR, though newer and in a rural area, should require fewer resources than the KCR to sustain operations as a stand-alone entity. The optimal structure of the GCR needs to be determined in the future.

A Population-Level Evaluation of the Effect of Antiretroviral Therapy on Cancer Incidence in Kyadondo County, Uganda, 1999-2008.

BACKGROUND: The introduction of antiretroviral therapy (ART) in the United States and Europe has led to changes in the incidence of cancers among HIV-infected persons, including dramatic decreases in Kaposi sarcoma and non-Hodgkin lymphoma, and increases in Hodgkin lymphoma, liver, and anogenital malignancies. We sought to evaluate whether increasing availability of ART is associated with changing cancer incidence in Uganda. METHODS: Incident cases of 10 malignancies were identified from Kampala Cancer Registry from 1999 to 2008. ART coverage rates for Uganda were abstracted from the Joint United Nations Program on HIV/AIDS reports. Negative binomial and Poisson regression modeled the association between ART coverage and age-adjusted cancer incidence. RESULTS: ART coverage in Uganda increased from 0% to 43% from 1999 to 2008. With each 10% increase in ART coverage, incidence of Kaposi sarcoma decreased by 5% [incidence rate ratio (IRR) = 0.95, 95% confidence interval: 0.91 to 0.99, P = 0.02] and stomach cancer decreased by 13% [IRR = 0.87 (95% CI: 0.80 to 0.95), P = 0.002]. Conversely, incidence of non-Hodgkin lymphoma increased by 6% [IRR = 1.06 (95% CI: 1 to 1.12), P = 0.05], liver cancer by 12% [IRR = 1.12 (95% CI: 1.04 to 1.21), P = 0.002], prostate cancer by 5% [IRR = 1.05 (95% CI: 1 to 1.10), P = 0.05], and breast cancer by 5% [IRR = 1.05 (95% CI: 1 to 1.11), P = 0.05]. ART coverage was not associated with incidence of invasive cervical cancer, lung, colon, and Hodgkin disease. These findings were similar when restricted to histologically confirmed cases. CONCLUSIONS: Our findings suggest that AIDS-defining malignancies and other malignancies are likely to remain significant public health burdens in sub-Saharan Africa even as ART availability increases.

Trends in the incidence of cancer in Kampala, Uganda 1991-2010.

The Kampala cancer registry is the longest established in Africa. Trends in incidence rates for a 20-year period (1991-2010) for Kyadondo County (Kampala city and a rural hinterland) illustrate the effects of changing lifestyles in urban Africa, and the effects of the epidemic of HIV-AIDS. There has been an overall increase in the risk of cancer during the period in both sexes, with incidence rates of major cancers such as breast and prostate showing particularly marked increases (3.7% and 5.2% annually, respectively). In the 1960s cancer of the oesophagus was the most common cancer of men (and second in women), and incidence in the last 20 years has not declined. Cancer of the cervix, always the most frequent cancer of women, has shown an increase over the period (1.8% per year), although the rates appear to have declined in the last 4 years. HIV prevalence in adults in Uganda fell from a maximum in 1992 to a minimum (about 6%) in 2004, and has risen a little subsequently, while availability of antiretroviral drugs has risen sharply in recent years. Incidence of Kaposi sarcoma in men fell until about 2002, and has been relatively constant since then, while in women there has been a continuing decline since 2000. Other HIV related cancers-non-Hodgkin lymphoma of younger adults, and squamous cell carcinoma of conjunctiva-have shown major increases in incidence, although the former (NHL) has shown a small decline in incidence in the most recent 2 years.

Changing cancer incidence in Kampala, Uganda, 1991-2006.

Incidence rates of different cancers have been calculated for the population of Kyadondo County (Kampala, Uganda) for a 16-year period (1991-2006). This period coincides with continuing social and lifestyle changes and the peak and subsequent wane of the epidemic of HIV-AIDS. There has been an overall increase in the risk of cancer during the period in both sexes, with the incidence rates of cancers of the breast and prostate showing particularly marked increases (4.5% annually). Prostate cancer is now the most common cancer in men. The incidence of cancer of the esophagus, formerly the most common cancer in men and second in frequency in women, has remained relatively constant, whereas the incidence of cancer of the cervix, the most common malignancy in women, continues to increase. Since the early 1990s the incidence of Kaposi sarcoma (KS) in men has declined, and while remaining relatively constant in women, it has been diagnosed at progressively later ages. The rates of pediatric KS have declined by about 1/3rd. The incidence of squamous cell cancers of the conjunctiva has also declined since the mid 1990s. Cancer control in Uganda, as elsewhere in sub-Saharan Africa, involves meeting the challenge of emerging cancers associated with westernization of lifestyles (large bowel, breast and prostate); although the incidence of cancers associated with poverty and infection (liver, cervix, esophagus) shows little decline, the residual burden of the AIDS-associated cancers remains a major burden.