Zambia National Cancer Registry was established by the Medical Research Council in November 1977 under the supervision of the Ministry of Health Headquarters. In early 1982 the Registry was transferred from the Ministry of Health to University Teaching Hospital (UTH).
A full time supervisor for the registry was appointed in 2014. Dr. Richard Nsakanya has an MPH (2009) and has worked on AIDS control and health systems management in Zambia. He is based in the Disease Surveillance & Monitoring Department in the Ministry of Health. The registry is located in an office on the first floor of the Paediatric Centre of Excellence at University Teaching Hospital in Lusaka.
c/o Paediatric Centre of Excellence
University Teaching Hospital
Postal: Private Bag RW1X)
There are three desk top computers and a laptop, with a printer and internet connection. The registry Director arranges for transport with the Ministry of Health for visit to data sources within Lusaka district. In addition to the supervisor, the registry has three staff: Ms. Rachel Chirwa, Mr. Severin Zulu , Mr. Richard Zimba. The registry staff are full time employees for the Ministry of Health. Travel expense funds and food allowance for staffs are process from the Ministry of Health by the Registrar.
Until 2015, the registry was receiving cancer notification forms from hospitals all over Zambia (population about 13 million in 2010), and entering the data into a CanReg-4 database. Now, there are staff in each Provincial Medical Office (PMO) that are responsible for data entry for their province (although there is a backlog of forms in the Lusaka office, still awaiting data entry). Now, the staff concentrate on recording data on all cases diagnosed or treated in Lusaka district (no matter where their place of residence), with the aim of complete coverage of the District Population At the 2010 census, the population of the District was 1,747,152.
The registry staff are supposed to visit all health facilities within Lusaka district to collect all cancer cases identified by any method.
Cancer Diseases Hospital (CDH) Full oncology treatment services (1 Linac, 1 Cobalt and 1 Brachytherapy machine plus chemotherapy). The main source of information is the computerised register of cancer cases seen in the hospital (system based on Microsoft Access database). The registry is using files exported from this system. Three files have to be merged (Patient, Clinical information, treatment information). The data (on address, tumour site, histology, stage etc) have to be coded. The files need to be formatted for entry into the registry (CanReg database), then the remaining data have to be checked for errors (IARC-check program). The data can then be imported into CanReg. For the other sources, no computer information system is available. The data are collected by filling in registration forms (Appendix 1).
The University Teaching Hospital is a huge multispecialty hospital. The medical records department has no disease index. Cases therefore have to be found by regular visits to the clinical services (especially surgery, gynaecology, paediatrics), to scan the admission/discharge registers, and complete registration forms.
The UTH Pathology Department has 3 qualified histopathologists, and one haematologist. The laboratory does not maintain any register of cases/specimens. The Request/report forms must be scanned for cancer diagnoses (registry staff are provided with copies). Patient address is not present on the forms – case notes have to be found in the referring hospitals to obtain the necessary minimum information on the patients. There are at least two private pathology laboratories in Lusaka.
The Lancet Nkanza Laboratory deals with specimens both from government and private sectors. The request form contains full patient details (including contact and permanent address, and phone numbers); reports are generated from a database, but unfortunately contain only patient name, age & sex.
It seems likely that, for these hospitals, data collection is carried out by leaving books of registration forms with the hospital administration. This was certainly the case for Lusaka Trust Hospital, and Our Lady’s Hospice.
Death Registration is carried out in the Department of National Registration. Deaths are registered by district, based on death certificates, completed by medical staff in hospital mortuaries (to which home deaths are taken). The information on cause of death is often poorly recorded, and may be inaccurate for home deaths, of which the certifying doctor will have had little direct information. The certificate itself includes name and address of informant, and it is this that is transferred to the registration document. The decedent’s home address is noted at the foot of the certificate. Since 2014, the department has created a computer file of deaths, and the supervisor can interrogate this file according to any of the data fields, and produce ad hoc reports in any format. Since 2015 coding of cause of death has begun, and this information is being entered. It should be noted that, in addition to their duties in Lusaka, the registry staffs have been carrying out data collection exercise in the provinces to train local staff, improve registration, the quality of reporting and reduce the reporting data backlog. They are also attempting to enter the backlog of forms received before local data entry began. They continue to receive a few notification forms from the health facilities that are unaware of devolution of data collection to the PMOs.
The registry has migrated from CANREG4 to CANREG5. The CANREG data entry closely follows the Notification Form (with the exception of not including the info on tobacco and alcohol, or on occupation).
The registry staffs have completed a first cancer registry report which included writing section of the report and analysing cancer incidence rates for the time period 2008 to 2012 using the population projection based on census 2010.