National Health Insurance
Sources of Data on Cancer in South Africa for NHI Modelling
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Data on deaths from cancer is collected by StatsSA and analysed as part of the burden of disease work by Dr Debbie Bradshaw and colleagues at the Medical Research Council (MRC). While this is useful to determine which cancers are responsible for the greatest loss of life, the long-term NHI modelling requires estimates of those needing and being initiated on treatment. The MRC also hosts the Cancer Epidemiology Research Group (CERG). “The main platform for CERG’s research is an on-going case-control study which began in Johannesburg’s tertiary hospitals in 1995”.
Data on the national incidence and prevalence of cancer is collected by the National Cancer Registry (NCR). Established in 19864, this voluntary pathology-based registry is now part of the National Health Laboratory Service. “Cancer data are collected from both public and private pathology laboratories nationally, and it is the only source of national cancer incidence data, albeit the rates reported are an underestimate of the true burden. Only incident cases of primary invasive cancer diagnosed by histology, cytology or haematology are recorded. The main objectives of the NCR are to monitor cancer burden and to publish and report cancer incidence for every year, stratifying by sex, age and population group. The NCR also attempts to report time trends”.
The publication of reports has been delayed due to difficulties in receiving data and the loss of key staff. However from March 2008 a “concerted effort is being made to shorten the time lag in cancer incidence reporting”. The latest report released is the 2000-2001 NCR Report.
A particularly useful source of comparative cancer data is CANCERMondial, which “provides access to information on the occurrence of cancer world-wide held and managed by the Cancer Information Section of the WHO International Agency for Research on Cancer (IARC)”. The data includes:
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“Incidence data collected by cancer registries worldwide: CI5 (Cancer Incidence in Five Continents) Volumes I to IX. “The nine volumes of Cancer Incidence in Five Continents now cover a period of approximately forty years.” “The ninth volume has a wider coverage than before presenting data from around the year 2000 (ideally the period 1998-2002) not only for entire populations but also for sub-populations living in the same geographic area.”
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“The data on incidence and survival of children and adolescents in Europe (ACCIS).
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Mortality data extracted from the World Health Organization (WHO) databank.
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The most recent estimates of the cancer incidence, mortality and prevalence, by sex and cancer site, for all the countries of the world (GLOBOCAN 2002).
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The incidence, mortality and prevalence statistics from 41 major cancers in the Nordic countries, starting from beginning of registration (the NORDCAN project in collaboration with the Association of the Nordic Cancer Registries).”
The GLOBOCAN 20022 data has been downloaded and used extensively for this policy brief. The estimates for South Africa are based on National Cancer Registry data but with a correction applied by the researchers “because of known under-reporting problem”. The observed data is “scaled to incidence using percentage of Microscopically Verified cases observed in the United Kingdom (by cancer, sex and age)”. The importance of the GLOBOCAN data is that the estimates have been prepared to be consistent around the world.
Tables for South Africa have been prepared using GLOBOCAN 2002 which give the expected incidence; one-year, three-year and five-year survival prevalence; and mortality. In all cases the tables are by age bands and gender, as well as by site of the cancer. These are available on the IMSA web-site for use by researchers and can be applied to the South African population as a whole. The figures were tested against a group of oncologists and they appear to be consistent with their practise experience and other literature. The graph below illustrates the incidence and prevalence figures per 100,000 lives.
Figure 2: Expected Rates of Incidence and Survival Prevalence of All Cancers except Skin in South Africa.
Estimates at a provincial level are bedevilled by the quality of primary data. Researchers evaluating the NCR data reported that “At present, the burden of cancer disease by province cannot be estimated from the available NCR data. This is due to a lack of information on patient addresses. Most clinicians are aware that patients cross provincial borders from less to better-resourced provinces to seek better treatment. Because of existing health policies governing provincial boundaries, patients tend to give local rather than their home addresses. In addition to patient movement, some health practitioners send their patient specimens to other provinces for diagnosis. All these factors reflect the services provided by each province on cancer management rather than the true burden of cancer by province.”
“In an effort to get a better understanding of the burden of cancer cases by province, it is recommended that population-based cancer registries be established in the nine provinces. The Department of Health ... has recommended the establishment of a rural and urban population-based cancer registry in each of the nine provinces. Until such recommendations come into effect, estimation of cancer incidence by province will remain a difficult task.” It has also been suggested that “making cancer a reportable condition (would) improve the quality and accuracy of the national cancer incidence data”.
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