and Mhamed Harif2
(1)
South African Medical Research Council, Cape Town, South Africa
(2)
Université Mohammed VI des Sciences de la Santé Cheikh Khalifa Hospital, Casablanca, Morocco
Keywords
RegistryIncidenceDistributionPatternsSurvivalTypesRegionalPediatricAfricaClassificationThroughout the world, there are approximately 15 million new cancer cases and 9 million cancer deaths estimated for 2015, with 48.2 % and 56.5 % of those being observed in low- and middle-income countries, respectively.
The population in Africa is above one billion. Children represent 41 % of the total population. In some African countries, the population is very young with more than half represented by children below the age of 15 years.
Cancer in childhood is a rare disease. In developed countries, only about 0.5% of all cancer occurs in children younger than 15 years. However, the mortality from childhood cancer occupies the second place following trauma (mostly car accidents).
As a result of the demographic distribution of the world population, 71.4 % of all cancer cases and 83 % of all cancer deaths occurring worldwide are reported among children living in low- and mid-income countries. The African continent is severely affected in terms of new cases as well as increased mortality among children diagnosed with cancer.
Applying the described incidence of 110–140 new cases of cases per million for developed countries, it is expected to report an annual new number between 47,000 and 55.000 children diagnosed with cancer in Africa.
The exact number is not known because of lack of cancer registries, or incomplete registries which do not include data on pediatric oncology cases.
So, What Is a Cancer Registry?
The cancer registry is a critical component of any cancer control program. The data of a cancer registry can be used in several areas including etiology research, primary and secondary prevention, and healthcare services planning.
The cancer registry collects, stores, analyzes, and interprets data on cancer cases.
A pediatric cancer registry refers to data collected on newly diagnosed children in the age group 0–15 years (some of the registries might include data until the age 18 years and some others until 21 years).
Types of Registries
There are two different types of cancer registries: the hospital-based cancer registry, and the population-based cancer registry.
- 1.
The hospital–based cancer registry is a register of data collected on all patients treated for cancer in a hospital or in a set of hospitals (central hospital-based cancer registry). The main objectives of a hospital-based cancer registry are to evaluate and improve the quality of patient care, to contribute to professional education, to provide information for hospital administration for planning purposes, and to serve as a basis for clinical research. Furthermore, hospital-based cancer registries can be responsible for controlling the follow-up of patients treated at a specific hospital. Hospital-based cancer registries cannot be used to calculate the incidence of cancer.
By its very nature, a central registry of hospital-based registries cannot be complete. Nevertheless, it is the most efficient and sustainable way of obtaining data, which can be used in statistical research, as it does not require a substantial expenditure. A minimum of data collected in a hospital-based registry would be: the demographic information (name, age, sex, and address), the type, localization and stage of the tumor, the histological type, the treatment and outcome , as well as the results of annual follow-ups. Should the patient die, the date and cause of the death should be recorded.
The cost of such a registry is limited to the salary of a data manager who works part time and who collects all the forms from the referring centers, private doctors, and laboratories.
- 2.
Population–based cancer registries are registries where information is collected on all cancer cases occurring in a defined population residing within a specified geographic area. Their main objective is the determination of incidence rates (by sex, age, primary site, stage of disease, etc.). Moreover, the data can also be used to conduct epidemiological studies to evaluate the actions of the cancer control program, as well as to assist in the planning of health services for the prevention, diagnosis, and treatment. If mortality data are also collected (which is not done in all cancer registries), a population-based cancer registry can also be used to calculate survival rates (and to estimate prevalence rates).
To compile accurate data, cases for such a registry should be actively sought. Registrars should contact departments of pathology, departments of radiology where radiotherapy is done, other hospital departments (such as surgery), chemical pathology or hematology laboratories, outpatient clinics as well as private clinics and laboratories. They should also study the death certificates and, by all the means described above, identify cases of cancer whose data must then be extracted from the records and entered in the registry.
In most African countries children with cancer are treated in specialized centers, which are at the same time the referring units. Sometimes a hospital-based registry might also represent a population-based registry if the treating hospital is the only one in the country where children with cancer are diagnosed and treated.
What Is the Value of a Cancer Registry?
The value of a cancer registry is entirely dependent on the quality of the data collected. To achieve its objectives, the population-based cancer registry should ensure:
The inclusion of all new cancer cases in a population (coverage)
The correct coding and classification of tumors (validity)
If survival data are also included in the registry, monitoring and follow-up of patients
Access to estimates of the population at risk (i.e., census data), preferably stratified by gender and age
The main aspects of data quality of a cancer registry are comparability, coverage, and validity. The coverage can be defined as the proportion of incident cases in a population that is included in the registry. Ideally, this number should be as close to 100 % as possible, so that the comparison of changes over time in the population covered by the registry as well as the comparison between registries reflects true differences only in cancer risk. However, full coverage is not achievable in most circumstances for the following reasons:
The patient does not seek or have access to healthcare and the case is never diagnosed.
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