TY - JOUR
T1 - Pitfalls of practicing cancer epidemiology in resource-limited settings
T2 - The case of survival and loss to follow-up after a diagnosis of Kaposi's sarcoma in five countries across sub-Saharan Africa
AU - Freeman, Esther
AU - Semeere, Aggrey
AU - Wenger, Megan
AU - Bwana, Mwebesa
AU - Asirwa, F. Chite
AU - Busakhala, Naftali
AU - Oga, Emmanuel
AU - Jedy-Agba, Elima
AU - Kwaghe, Vivian
AU - Iregbu, Kenneth
AU - Jaquet, Antoine
AU - Dabis, Francois
AU - Yumo, Habakkuk Azinyui
AU - Dusingize, Jean Claude
AU - Bangsberg, David
AU - Anastos, Kathryn
AU - Phiri, Sam
AU - Bohlius, Julia
AU - Egger, Matthias
AU - Yiannoutsos, Constantin
AU - Wools-Kaloustian, Kara
AU - Martin, Jeffrey
N1 - Publisher Copyright:
© 2016 Freeman et al.
PY - 2016/2/6
Y1 - 2016/2/6
N2 - 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.
AB - 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.
KW - Africa
KW - Cancer
KW - Cohort
KW - HIV/AIDS
KW - Kaposi's sarcoma
KW - Loss to follow-up
KW - Mortality
KW - Resource-limited settings
KW - Survival
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U2 - 10.1186/s12885-016-2080-0
DO - 10.1186/s12885-016-2080-0
M3 - Article
C2 - 26852390
AN - SCOPUS:84957105665
SN - 1471-2407
VL - 16
JO - BMC cancer
JF - BMC cancer
IS - 1
M1 - 65
ER -