Eastern Cape Province Cancer Registry is population-based and was established in the 1980s as a special registry by the Programme on Mycotoxin and Experimental Carcinogenesis (PROMEC) of the South African Medical Research Council (SAMRC). Initially the register was set up to monitor trends in the incidence and spatial geographical variations of oesophageal cancer in four magisterial areas of the former Transkei region of the Eastern Cape Province. These were Butterworth and Centane; the so-called high incidence areas and Bizana and Lusikisiki the low incidence areas then. In 1998 the registry expanded its scope to collect data on all cancers and expanded the geographic coverage as well covering a population of eight (8) magisterial areas that include the initial four and Idutywa, Nqamakwe, Willowvale and Flagstaff. These magisterial areas are in the municipalities of Ntabankulu, Mbizana and Qaukeni in the north-eastern part of the former Transkei region and Mnquma and Mbashe in the south-western part of the region. The registry is funded mainly by the SAMRC.
Ms Ntuthu Somdyala (Registry Head)
Building C, Second Floor, Room 306
Francie Van Zijl Drive
Parowvalley, Cape Town
South African Medical Research Council
Burden of Disease Research Unit
PO Box 19070
7505 SOUTH AFRICA
Telephone: +27 21 938 0314; Fax: +27 21 938 0310
The registry has full time and part time personnel. Four full time personnel includes one senior scientist who manages and oversees all activities of the registry and one junior scientist who manages data. Also 3 data collectors on part time basis. They are based in major sources of data which are St Elizabeth in Lusikisiki, Mthatha General Complex (regional referral hospital) and Frere Radiation Oncology Unit (regional oncology hospital). All three ladies have basically knowledge on cancer diagnosis; training even for a short time is faster mostly introducing them to detailed information.
The registry is collaborating with 15 hospitals that serve the area including the pathology laboratory under the National Health Laboratory Services (NHLS) situated in Nelson Mandela Medical School, Mthatha . Both active and passive case finding methods are used. The active case finding system was set up by the registry head utilising multiple sources. Collaborating hospitals located in eight magisterial areas are visited twice a year. During these visits records are examined for all cancer patients treated in the facility and their details are abstracted for inclusion in the registry. The records perused include in-patients' admission, treatment, transfer, discharge and death registers, midnight census records and pathology reports. Case finding also extends to hospitals outside the registration area to which cancer cases may have been referred or presented themselves. These include Mthatha General Hospital, the regional referral centre, Frere Hospital in East London which is the regional radiotherapy referral centre and five hospitals in KwaZulu-Natal Province; Usher Memorial in Kokstad, King Edward VIII, Inkosi Albert Luthuli, King George V and Addington in Durban.
In the Registry, cancer sites are manually coded for topography and morphology according to the International Classification of Diseases for Oncology (ICD-O), third edition (Fritz et al., 2000) and captured using CanReg4, a computer program designed by the Unit of Descriptive Epidemiology of the International Agency for Research on Cancer. Only malignant cases are included in the analysis. Duplicates are carefully assessed to clarify whether they are new malignancies, secondary cancers or duplicate information. The geographic information is coded according to a list of village codes based on the 1985 census, which was amended with any new residential areas that had formed.
Recent population census is used as a base for the population estimates to calculate the incidence rates for each magisterial area. The direct method as described by Boyle and Parkin (1991) is used to calculate age-standardised rates (ASR) and the standard population used is the World Standard. Population census in South Africa takes place after every 10 years and the last one was in 2011.
Effective operation of the cancer registry depends on the continuous supply of identifiable information from several sources notably clinicians, pathologists, hospital patient registration systems and vital statistics offices. These data suppliers can only be expected to continue to provide such information if the cancer registry adheres to an adequate set of guidelines on confidentiality and safe keeping of that data (IARC Report No.2004/03). The preservation of confidentiality concerns all members of the registry staff.
• Registry office is only accessible to registry staff and locked when registry personnel away
• Cancer notification forms are locked away and limited access only to authorized persons
• Identifiable information is never taken outside the registry. If at all taken out, this is only by the registry head or assigned responsible person and strict measures to protect data are adhered to
• Cancer notification forms sent by data collectors are locked away immediately when received by mail
• Data collected actively from collaborating hospitals are not disclosed to other parties than the data source and the registry
• Data are not left in a place where an unauthorized person might have access, e.g. in a car. It is highly recommended that data actively collected are kept under lock and key preferably in a lockable case until they reach the registry
ACCESS TO DATA
• Access to the dataset by registry staff is at different levels and controlled by the use of pin codes. Each staff member should adhere to his level of access e.g. supervisor, registrar or statistician, etc.
• Only the registry head has the authority to make changes in the dataset
• Back-up memory sticks are locked away in a safe fire-proof place and backup in a share drive is performed weekly
• Information on a paper is shredded into small pieces before disposed into a paper bin
USE AND RELEASE OF DATA
• There are standard procedures followed related to the release of confidential data and dealt with by the registry head
• No information is provided to insurance companies, medical funds, pension schemes, etc
• Data sent abroad for international publication or collaboration studies do not permit individual identification. A registry code number is used which does not permit person’s identification
• Annual reports are prepared in tabular form or graphs or histograms making individual identification impossible
Completeness of registration and ensure data quality
There is a range of factors responsible for these challenges which include some mentioned;
- Some patients prefer to visit referral centres and travel on their own, sometimes have to use addresses of relatives living in surrounding areas, thus rendering themselves non-residents of the registration area. This is a challenge to a population-based cancer registry, which uses addresses to identify residents of the registration area
- Rural health facilities generally do not have a computerized patient information system that could help to identify all the cancer cases from that facility nor in the abstraction of the record. Information is still on paperwork which needs proper filing which in referral hospitals is properly done but not in peripheral hospitals
- Health seeking behavior; due to ignorance about and attitude towards cancer in rural communities, a registry loses a small percentage of cases that prefer traditional healers to western medicine. In some cases, the patient will eventually seek care at a health facility, but in others, the patient may die at home. In such an event, there is no alternative data source, such as post-mortem records, because such forensic pathology services are only available for the deaths that arise from unnatural causes
- Diagnoses are based on clinical examination by general medical practitioners due to scarcity of specialists such as oncologists, pathologists, trained laboratory technicians and diagnostic equipment. For verification of diagnosis or better definition of the cancer site, patients are referred to a regional referral hospital. The referral of the patient depends on the stage at which he/she presents himself at the health facility, and most of the time is very late. Thus, the diagnosis is sometimes restricted to the initial clinical assessment. While this may not provide the optimal verification, it none-the-less reflects a strength of the registry that clinical diagnosed cancers are included.
Despite these challenges, the registry staff appreciates the cooperation, understanding and assistance received from medical and nursing personnel of collaborating hospitals and facilities during cancer data collection. Special efforts to develop collaborative networks within the health facilities have been essential for the ongoing success of the registry.
The population covered by the registry at the most recent census 2011 is 1.1 million (www.statssa.gov.za). 99% of the population are Black Africans who speak isiXhosa supporting both Christian and traditional norms and values whereas just 1% is coloured population.
Figure 2. A Map showing areas covered by the registry in the Eastern Cape (EC) Province
Recently analysed data for the period 2003-2007, showed that a total of 2 808 new malignant cases were recorded of which 1 113 (39.7%) were males and 1 695 (60.3%) females. The annual number of cases was fairly consistent during this period with an annual average of 561 cases per annum.
Figure 3. Percentage distribution of the top 10 cancers by sex, 2003-2007
PUBLICATIONS AND TECHNICAL REPORTS
Registry information including technical reports and publications are used by the provincial health, hospitals and NGOs for planning and application of cancer intervention programmes. Below is the list of publications and reports generated by the registry.
Forman D, Bray F, Brewster DH, Gombe Mbalawa C, Kohler B, Piñeros M, Steliarova-Foucher E, Swaminathan R and Ferlay, J eds (2013) Cancer Incidence in Five Continents, Vol. X (electronic version) Lyon, IARC. http://ci5.iarc.fr last accessed on [05/08/2014].
Somdyala NIM, Bradshaw D, Gelderblom WCA. Cancer incidence in selected municipalities of the Eastern Cape Province, 2003–2007. Eastern Cape Province Cancer Registry Technical Report. Cape Town: South African Medical Research Council, 2013. ISBN: 978-1-920618-10-0.
Somdyala NI, Bradshaw D, Gelderblom WC, Parkin DM. Cancer incidence in a rural population of South Africa, 1998-2002. Int J Cancer. 2010 Nov 15; 127(10):2420-9. PubMed PMID: 20162610.
Somdyala NIM, Bradshaw D, Curtis B and Gelderblom WCA. Cancer incidence in selected municipalities of the Eastern Cape Province, 1998-2002: PROMEC Cancer Registry Technical Report. Cape Town: South African Medical Research Council, 2008.
Somdyala NIM, Bradshaw D, Curtis B, Gelderblom WCA. Cancer incidence in selected municipalities of the Eastern Cape Province, 1998-2002: PROMEC Cancer Registry Technical Report. Cape Town: South African Medical Research Council, 2007.
Somdyala NIM, Marasas WFO, Venter FS, Vismer HF, Gelderblom WCA, Swanevelder SA. 2003. Cancer patterns in four districts of the Transkei Region of the Eastern Cape Province, South Africa: 1991-1995. South African Medical Journal; 93: 144-148.
Makaula N, Marasas WFO, Venter FS, Badenhorst CJ, Bradshaw D, Swanevelder S. 1996. Oesophageal cancer and other cancer patterns in four selected districts of Transkei, Southern Africa: 1985 - 1990. African Journal of Health Sciences; 3: 11-15.
Jaskiewicz K, Marasas WFO, Van der Walt FE. 1987. Oesophageal and other main cancer patterns in four districts of Transkei, 1981 - 1984. S Afr Med J; 72: 27-30.