Pitfalls of practicing cancer epidemiology in resource-limited settings: the case of survival and loss to follow-up after a diagnosis of Kaposi's sarcoma in five countries across sub-Saharan Africa.
- Freeman E Department of Dermatology, Massachusetts General Hospital, Harvard Medical School, Bartlett Hall 6R, 55 Fruit Street, Boston, MA, 02114, USA. efreeman@mgh.harvard.edu.
- Semeere A Infectious Diseases Institute, Makerere University, Kampala, Uganda.
- Wenger M University of California, San Francisco, USA.
- Bwana M Mbarara University of Science and Technology, Mbarara, Uganda.
- Asirwa FC Indiana University School of Medicine, Indianapolis, IN, USA.
- Busakhala N AMPATH, Moi University, Eldoret, Kenya.
- Oga E Institute of Human Virology, Abuja, Nigeria.
- Jedy-Agba E Institute of Human Virology, Abuja, Nigeria.
- Kwaghe V University of Abuja Teaching Hospital, Abuja, Nigeria.
- Iregbu K National Hospital of Abuja, Abuja, Nigeria.
- Jaquet A INSERM U897 & ISPED, Université Bordeaux, Bordeaux, France.
- Dabis F INSERM U897 & ISPED, Université Bordeaux, Bordeaux, France.
- Yumo HA R4D International, Yaounde, Cameroon.
- Dusingize JC Regional Alliance for Sustainable Development, Kigali, Rwanda.
- Bangsberg D Center for Global Health, Massachusetts General Hospital, Boston, MA, USA.
- Anastos K Albert Einstein College of Medicine/Montefiore Medical Center, Bronx, NY, USA.
- Phiri S Lighthouse Trust Clinic, Lilongwe, Malawi.
- Bohlius J University of Bern, Bern, Switzerland.
- Egger M University of Bern, Bern, Switzerland.
- Yiannoutsos C Indiana University Fairbanks School of Public Health, Indianapolis, USA.
- Wools-Kaloustian K Indiana University School of Medicine, Indianapolis, IN, USA.
- Martin J University of California, San Francisco, USA.
- 2016-02-08
Published in:
- BMC cancer. - 2016
Adult
Africa South of the Sahara
Delivery of Health Care
Female
Follow-Up Studies
HIV Infections
Humans
Male
Middle Aged
Proportional Hazards Models
Sarcoma, Kaposi
English
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.
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.
- Language
-
- English
- Open access status
- gold
- Identifiers
-
- DOI 10.1186/s12885-016-2080-0
- PMID 26852390
- Persistent URL
- https://sonar.ch/global/documents/201399
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