There have been significant gaps in data when it comes to understanding South Africa’s cancer burden, but improvements are on the horizon, with an initiative allowing the public to assist in data gathering – and which will feed into the existing National Cancer Registry.
The new patient-led cancer registry is a joint initiative of Living with Cancer (LWC), an NGO, and the existing National Cancer Registry (NCR) housed in the National Institute of Communicable Diseases (NICD), writes Elri Voigt in Spotlight.
While the NCR, Statistics South Africa (StatsSA) and others already provide important information, there are huge gaps in the existing data, and many experts believe that cancer incidence and deaths are grossly under-reported.
More than 85 000 people were diagnosed with cancer in 2019, and there were just under 44 000 registered deaths from cancer in 2018, according to a StatsSA report on cancer in South Africa (2008 to 2019). However, the true numbers are probably higher.
Salomé Meyer of the Cancer Alliance, a civil society collective of cancer support organisations and advocates, told Spotlight that cancer cases are massively under-reported, in some cases roughly by 40%.
How data are collected
Associate Professor Glenda Davison, an expert in haematology and immunology at the Cape Peninsula University of Technology, said that currently, data come from the NCR, which is overseen by the National Health Laboratory Services and run by the NICD.
“The data come from the laboratory, which records the pathology of the tumour or cancer and also the type of cancer. This will include all lab results like the histology, cytology and bone marrow findings. It also includes demographic data such as age, sex and population group,” she said.
There is also a registry for paediatric cancers, as these are often different from adults. The data include information on the pathology and all diagnostic criteria, including demographics.
“However, this has been criticised in that it lacks specifics on rare cancer types and services available for patients as well as therapy,” she added.
“There is also a lot of under-reporting… So, the incidences are probably much higher, meaning the full picture of cancer prevalence in SA is still unclear.”
There are also selected population-based cancer registries in Gauteng and KwaZulu-Natal that provide cancer data representative of the population, said Dr Mazvita Muchengeti, head of department at the NCR during a press conference where the patient-led cancer registry was launched at the end of January.
She said a population-based registry – considered to be the gold standard for cancer surveillance – is where all data on cancer cases within a defined population are collected.
This means that cancer diagnosed through a pathology report, as well as those diagnosed by radiological means or symptoms and other signs, are counted by the surveillance teams.
The registries generate reports on the specific regions in which they operate, for example, the one in Gauteng is in the Ekurhuleni District and gathers data on cancer cases in that district only.
This differs from the pathology-based registry, where cancer cases are only identified through pathology reports done at labs.
“It is not possible to do population-based registration in the whole country because it’s very expensive, being active surveillance where we have nurses going into hospitals, (and) hospices collecting data and scrutinising patient records,” she said.
How the registry works
The LWC patient-led registry is the first of its kind in the country, and is now ready to be used by the public after a memorandum of understanding was signed last year between LWC and the NCR.
Accessible via the LWC website, it allows people to register cancer patients and give information about them and their diagnosis.
The data are then fed directly into the existing NCR and used to validate and improve existing information as well as capture patients who have been missed.
The data can also be used to identify gaps in the NCR’s surveillance system. Patients from both the private and the public healthcare sector can supply data to the LWC registry.
“The new will be compared with the NCR database and used to fill gaps and identify any new data sources our registry may be systematically missing,” said Muchengeti.
“Identifiers like names, ID, place of diagnosis will be compared across the two registries to check for those already on the records. If key information (such as population group, which is often missing in private sector data) is missing, this information can be added to the NCR record.”
Wagner said LWC, while being the first patient-led registry in South Africa, will also provide support and access to resources.
“We can work together to get a real understanding of the state of cancer in South Africa. Collectively, we can drive the change and transform the landscape of cancer care …and ensure no one faces this disease alone anymore,” she said.
Reasons for under-reporting
Meyer said there were several reasons for under-reporting of cancer data, including that while the NCR is a pathology-based registry, not all cancers are diagnosed via a pathologist’s report, and some cancers remain undiagnosed.
Within the public sector, Meyer also listed a lack of access to the healthcare system, ineffective referral processes, lack of patient knowledge and presenting to the health system only in the late stages of disease, among contributing factors.
Additionally, because deaths are not reported via primary cause, a cancer patient could die of a heart attack and the cause listed would be “heart attack” instead of cancer, thus not featuring in the cancer mortality data.
Traditional leaders are also able to report cause of death, but don’t necessarily have the medical training to do so accurately, which also causes issues with the accuracy of cause of death data.
See more from MedicalBrief archives:
Cancer statistics in SA skewed by incomplete data, under-reporting
Cancer deaths in South Africa on the rise
SA cancer rates set to double by 2030, actuaries predict
Ageing population contributes to high cancer deaths in SA