Cancer registry yet to collect any significant data

LAHORE
The Punjab Cancer Registry (PCR), set up to ascertain the prevalence and trends of cancer in Punjab, has yet to collect any significant data as it could collect only a half-cooked data from a single district of Lahore in a decade.
It is learnt that the PCR, a population-based cancer registry set up by an enthusiastic group of professionals in 2005 to collect cancer statistics in Punjab, was so far limited to collecting information on cancers being diagnosed only among the residents of the Lahore district. However, the registry is now expanding its role to capture data on cases being diagnosed among the residents of Lahore’s adjoining districts including Kasur, Sheikhupura, Nankana Sahb, Gujranwala, Hafizabad, and Faisalabad.
The PCR established a decade back to record cancer statistics in Punjab is being sponsored by the Shaukat Khanum Memorial Cancer Hospital & Research Centre (SKMCH&RC), Lahore.
The registry, in a recently-released report on cancer cases of 2014 from the Lahore district, revealed that, in all age groups and both genders combined, 5,521 new cancer cases were diagnosed in the Lahore district in 2014. Of these, 5,138 (93.06%) were recorded in adults and 383 (6.94%) in children less than or equal to 18 years of age. Further, of the total, 57% were found in female and 43% in male population.
The five most common cancers noticed in the population were: breast (25.8%), Non-Hodgkin’s Lymphoma (NHL) 4.9%, lip and oral cavity 4.8%, brain 4.7% and gastro-intestinal cancers (colon, rectum, and anus) 4.6%; in males: prostate 9.2%, NHL 7.5%, lip and oral cavity 7%, colorectal 7%, and urinary bladder 6.9%; in females: breast 44.3%, corpus uteri and uterus 4.1%, ovary 3.9%, lip and oral cavity 3.2%, gastrointestinal cancers 3.1%; and in children: Acute Lymphoblastic Leukaemia 18.8%, Gliomas 14.1%, NHL 9.9%, Hodgkin’s disease 8.6%, and Retinoblastoma 4.7%.
These statistics in the latest report posted on the PCR’s official website: http://punjabcancerregistry.org.pk/ are likely to change as the registry is still receiving information on cases diagnosed between 2012 and 2014.
“The absence of any mechanism to collect credible data on prevalence of cancer in Pakistan is retarding us from taking appropriate measures for the diagnosis and treatment of this disease,” said Dr Farhana Badar, biostatistician and cancer epidemiologist at the SKMCH&RC, while talking to The News. In certain countries, she said, the notification of cancer cases was mandated by the law, whereas in Pakistan, it was not a requirement by the law, but “we cannot ignore the importance of having a cancer registry in Pakistan”. She informed that cancer registration was about systematic collection, storage, analysis, interpretation and reporting of data on cancer. Cancer registries are of two types: hospital-based and population-based. Hospital-based registries record information about patients diagnosed and treated in a particular hospital.
The main purpose of such registries is to contribute to patient care by providing readily accessible information. The data are used mainly for administrative purposes and reviewing clinical performances.
Dr Farhana said a step beyond setting up a hospital-based registry was a population-based registry that was considered to be a great public health achievement as it reflected a joint effort on the part of professionals representing different facilities of a region. In contrast to hospital-based registries, population-based registries monitor the frequency of new cancer cases diagnosed in a specified population living in a geographically demarcated area over a specified period and produce statistics on the occurrence of cancer in the population.
This helps provide a framework for assessing and controlling the impact of cancer in the community. Thus, the emphasis is on epidemiology and public health. For population-based cancer registration, Dr Farhana informed that the data were captured by the cancer registry staff from different sources like hospitals and laboratories.
The data were collected both on the demographic features of patients and clinical characteristics of disease and were based on the minimum data requirement standard set by the International Agency for Research on Cancer (IARC), a sub-office of the World Health Organisation.
Dr Farhana said the method of data collection could either be through active collection or passive reporting. Active collection involved registry personnel actually visiting different sources. Passive reporting involved healthcare workers completing the notification forms developed and distributed by the registry or sending copies of discharge abstracts to the registry.
A mixture of both the procedures is usually adopted by most registries of the world. While giving details about the procedure of data collection by the PCR, Dr Farhana said the staff of the Cancer Registry and Clinical Data Management Unit of the SKMCH&RC oversaw data collection, ensured data entry into software specifically designed for this purpose, and collated results to be presented to professionals and agencies, at request.
Further, the registry was recognised by the IARC in Lyon, France, and registered under the Societies’ Act of Pakistan 1860.
She informed that the PCR had around 15 collaborating centres in the Lahore district, the nine-member Governing Council and 38 professionals who represented both private and government facilities.
She said the WHO used the PCR’s data collected between 2008 and 2010 along with two other sources - Federal Bureau of Statistics, Pakistan, and a paper by Dr Yasmin Bhurgri (late), who was managing the Karachi Cancer Registry, and prepared a report called “Globocan 2012” released in December 2013. Dr Farhana said running a cancer registry was a herculean task in a developing country like ours in view of limited resources allocated to health and other problems.
Nevertheless, she said: “Since cancer is already being seen as a significant health problem in our country, its surveillance should be a public health priority. This would be the way forward in preventing cancer.”