|Year : 2018 | Volume
| Issue : 4 | Page : 86-89
An overview of cancer registration in India: Present status and future challenges
Soumya Swaroop Sahoo1, Madhur Verma2, Pragyan Paramita Parija3
1 Department of Community Medicine and Family Medicine, AIIMS, Bhubaneswar, Odisha, India
2 Department of Community Medicine, Kalpana Chawla Government Medical College, Karnal, Haryana, India
3 Department of Community Medicine, AIIMS, Raipur, Chattisgarh, India
|Date of Web Publication||26-Dec-2018|
Dr. Soumya Swaroop Sahoo
Department of Community Medicine and Family Medicine, AIIMS, Bhubaneswar, Odisha
Source of Support: None, Conflict of Interest: None
Cancer registration is pivotal for cancer epidemiology and for planning and implementation of cancer policy and research. Morbidity and mortality burden of cancer in India is one of the highest in the world. India has a network of cancer registry distributed across the country, a process which began in the 1960s. The cancer registration in India has expanded including many new hospital-based and population-based cancer registries. Some new initiatives such as cancer atlas and online software programmes have been started for streamlining the process. However representativeness, urban-centric data, timeliness, and quality of cancer data are some of the problems still troubling the process of cancer registration in India. In this context, we should look for a unified systemic framework using newer information and management systems for capturing a complete and clear picture of cancer in India.
Keywords: Cancer, cancer atlas, India, registration
|How to cite this article:|
Sahoo SS, Verma M, Parija PP. An overview of cancer registration in India: Present status and future challenges. Oncol J India 2018;2:86-9
|How to cite this URL:|
Sahoo SS, Verma M, Parija PP. An overview of cancer registration in India: Present status and future challenges. Oncol J India [serial online] 2018 [cited 2019 May 19];2:86-9. Available from: http://www.ojionline.org/text.asp?2018/2/4/86/248536
| Introduction|| |
Cancer is one of the major causes of morbidity and mortality around the world. It is the second leading cause of death after cardiovascular diseases (CVDs). The increase in cancer cases all over the world in recent times has been due to the epidemiological transition, aided by an increase in life expectancy and an ever-aging population along with more prevalent unhealthy lifestyles. As per the latest GLOBOCAN 2018 data, there will be an estimated 18.1 million new cancer cases and 9.6 million cancer deaths in 2018. Overall, lung cancer is the most commonly diagnosed cancer (11.6% of the total cases) and the leading cause of cancer death (18.4% of the total cancer deaths), followed by a female with breast cancer (11.6%).
India is also experiencing a simultaneous increase in cancer cases with increased detection and advances in cancer care. In India, in 2018 over 1.1 million new cancer patients were registered and 0.78 million people died of cancer. More than 80% of cancers in India present in advanced stages which makes their management a difficult task. Patients with cancer have a poorer prognosis in low- and middle-income countries (LMIC's) including India because of presentation at advanced stages, relatively low cancer awareness and skewed distribution of cancer care facilities.,
The rapid increase in the number of cases, calls for streamlined information and reporting system in cancer for better management. Cancer registration is fundamental for successful implementation of program. The main function of cancer registry is to register, in a complete, continuous, and systematic manner, the personal characteristics of all cancer patients, as well as clinical data and the anatomical pathology of each malignant tumor, for further analysis and interpretation of the information.
Cancer registration is an essential component of surveillance for cancer prevention and control and is required to a unified, scientific and public health approach. They provide robust epidemiological data for cancer prevention and control, planning, and action.
Worldwide, cancer registries have been instrumental for the determination of cancer burden; conduct of research and in the planning and implementation of cancer control measures. Cancer registries are imperative tools for collecting accurate and complete information on cancer incidence, prevalence, and mortality in a given geographical location. Furthermore, they can provide reliable data to be used to conduct research, plan, and implement cancer control and for other public health planning.
| Cancer Registry in India|| |
The history of cancer registration in India is not very remote. Barring a few surveys before, cancer registration in India first began when the Indian Cancer Society established a population-based cancer registry in Mumbai in 1963. Subsequently, three satellite registries of the Mumbai registry were established; at Pune in 1972, at Aurangabad in 1978 and at Nagpur in 1980. In 1982, realizing the importance of cancer registration Indian Council of Medical Research (ICMR) initiated a national network of cancer registration, with the following objectives: (1) Generating authentic data on the magnitude and pattern of cancer problem, (2) undertaking epidemiological investigations and institute control measures, and (3) promoting human resource development in cancer registration and epidemiology.
Since then cancer registration in India has come a long way. There are mainly two types of cancer registry functional in India.
Population based cancer registry
These registries collect data on cancer incidence and mortality from a defined geographical region. The case finding is active. Population based cancer registry (PBCRs) in India provide reliable data on magnitude, patterns and trends of cancer over time, and the impact of cancer control activities can be assessed. They generate epidemiologically relevant data for cancer control and for cancer policy formulation. They represent different geographical regions in India covering approximately <15% of the Indian population.
Hospital based cancer registry
These are concerned with recording of information on cancer patients seen in hospitals irrespective of the residential status of the patient. They collect information on patients, their demographic details, diagnosis, staging, and treatment. Hospital-based cancer registries (HBCRs) are useful to plan for hospital services, ascertainment of available infrastructure and aid in hospital's administration to improve patient care. In areas where PBCR's are unavailable, HBCRs contribute to planning and policy making.
As of now, there are 33 PBCR and over a hundred HBCR in India functional currently.,
| Sources of Cancer Data|| |
Cancer data in India are mostly obtained through active methods in PBCR. The cancer registry personnel visit all the potential sources of cancer patients and their records to collect data on a standard pro forma. After establishing a PBCR, identification and list of all potential sources of cancer cases inside as well as outside the registry area is the first step for data collection.
The main sources of cancer data are from tertiary care specialist cancer hospitals, general hospitals, private hospitals, nursing homes, pathology laboratories, medical records, and medical certification of the cause of death data. As the data come from multiple sources, it is screened for duplication. After screening for duplication, it is then subjected to quality control checks and then used for analysis and reporting. Cancer cases are coded as per the International Classification of Diseases for Oncology. Personal identifiers, demographic variables, date of diagnosis, the most valid basis of diagnosis, tumor site and morphology, the extent of disease, and treatment(s) given up to 6 months after diagnosis are the parameters of data collections.
| Challenges|| |
Indian cancer registries have advanced from the nascent stage in the 1960s to being the source of cancer data for policy formulation on a large scale. However, there are many challenges which the NCRP is currently facing.
Cancer registration is not mandatory in India. Notification is an important source of incidence, prevalence, morbidity, and mortality data. Notification of cancer will lead to improved awareness of common etiologic agents, a better understanding of common preventable causes and better utilization of health resources with better monitoring and evaluation of the effectiveness of health programs such as cancer screening and cancer treatment programs which ultimately might improve survival.
Till now, mostly the registration is restricted to urban areas. It might be due to the skewed distribution of cancer hospitals and PBCRs predominantly in urban areas. Only two PBCR's are functional exclusively in rural areas. Furthermore, many cases in the private sector do not come under the surveillance. With <15% population coverage the cancer registries are unevenly represented and not a representative of the country's cancer data. India is still lacking PBCR's in larger states such as Rajasthan, Bihar, Uttar Pradesh, and Odisha.
Cancer registries are expected to provide reliable quality data within stipulated time with least delay. However, this process is time-consuming and inadvertently there is a time lag between diagnosis and entry into the registry. Furthermore, the data collection process is resource consuming and entails inordinate costs, particularly the active registration process in PBCR's. Regarding the source of data, the mortality reporting system in India is not flawless and hospitals do not co-operate all the time in the registration process. The lack of cooperation of data sources within a catchment area affects the completeness of data and hence overall quality.
Cancer survival is important in present times with improved modalities and better avenues of treatment. In the present situation of India, there are only two-time points for the collection of data on cancer patients, i.e., at diagnosis (incidence) and at death (mortality). The cases need to be followed up for survival estimates of groups of cancer patients from PBCRs. In the long run, cancer diagnosis and treatment, and the effectiveness of overall cancer services in a given region can be evaluated by these important indices. In India, only some of the PBCR's have undertaken survival studies.
| Way Forward|| |
To streamline the process, National Centre for Disease Informatics and Research (NCDIR) was established by ICMR in 2011 based at Bengaluru. The broad and overall objective of the NCDIR is to sustain and develop a national research database on cancer, diabetes, CVD, and stroke. It utilizes recent advances in electronic information technology within a national collaborative network, to undertake etiological, epidemiological, clinical studies and research in these areas. The current thrust areas of NCDIR are cancer registries, patterns of care and survival studies (POCSS), and development of software applications programs.
A welcome step under NCDIR has been the establishment of cancer Atlas More Details. According to the data of the NCRP, microscopy is the basis of diagnosis in over 80%–85% of registered cases of cancer. Hence, the cancer atlas project was started with the objective of obtaining an overview of patterns of cancer in different parts of the country in a relatively cost-effective way using recent advances in computer and information technology transmission. It was supplemented by strengthening the pathology departments of the medical colleges and hospitals with information technology infrastructure. This helps to establish linkage between the medical colleges and cancer registries along with real-time data collection. The cancer registries can be integrated into the reporting system of the medical colleges which are usually robust and timely. Till date, cancer atlas are functional in Punjab and Haryana states. Cancer atlas expedites the process, with the added advantage of reducing the cost of cancer registration. Furthermore in Karnataka, state cancer notifiability program has been started along with POCSS. The cancer atlas is expected to give a rapid fillip to study of cancer epidemiology and research. The process for mandatory notification of cancer cases has started in some states such as Karnataka, Gujarat, and Manipur.
| Conclusion|| |
India has made slow but substantial improvement in cancer registration in recent times. However, still a lot remains to be achieved. It faces stiff challenges in ensuring the timeliness and quality of data along with its optimum utilization in the backdrop of a huge population and multiplicity of sources. Keeping the resource constraints in mind for an LMIC like India, we need to make the maximum use of available resources to capture a comparable, clear and broad picture of cancer in India.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Global Burden of Disease Cancer Collaboration, Fitzmaurice C, Akinyemiju TF, Al Lami FH, Alam T, Alizadeh-Navaei R, et al.
Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 29 cancer groups, 1990 to 2016: A Systematic analysis for the global burden of disease study. JAMA Oncol 2018;4:1553-68.
Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2018;68:394-424.
Takiar R, Nadayil D, Nandakumar A. Projections of number of cancer cases in India (2010-2020) by cancer groups. Asian Pac J Cancer Prev 2010;11:1045-9.
Chalkidou K, Marquez P, Dhillon PK, Teerawattananon Y, Anothaisintawee T, Gadelha CA, et al.
Evidence-informed frameworks for cost-effective cancer care and prevention in low, middle, and high-income countries. Lancet Oncol 2014;15:e119-31.
Sivaram S, Majumdar G, Perin D, Nessa A, Broeders M, Lynge E, et al.
Population-based cancer screening programmes in low-income and middle-income countries: Regional consultation of the international cancer screening network in India. Lancet Oncol 2018;19:e113-22.
MacLennan R. Items of patient information which may be collected by registries. In: Cancer Registration: Principles and Methods. Lyon France: International Agency for Research on Cancer; 1991. p. 43-63.
Jedy-Agba EE, Oga EA, Odutola M, Abdullahi YM, Popoola A, Achara P, et al.
Developing national cancer registration in developing countries – Case study of the Nigerian national system of cancer registries. Front Public Health 2015;3:186.
Jussawalla DJ, Deshpande VA. Cancer in Greater Bombay-1964. Mumbai, India: Mumbai Cancer Registry, Indian Cancer Society; 1966.
National Cancer Registry Programme. Code Manual – Hospital Cancer Registry. New Delhi, India: Indian Council of Medical Research; 1987.
Murthy NS, Nandakumar BS, Pruthvish S, George PS, Mathew A. Disability adjusted life years for cancer patients in India. Asian Pac J Cancer Prev 2010;11:633-40.
Dhar M. A critical review of evolution of cancer registration in India. J Tumor Med Prev 2018;2:555594.
Swaminathan R, Rama R, Shanta V. Lack of active follow-up of cancer patients in Chennai, India: Implications for population-based survival estimates. Bull World Health Organ 2008;86:509-15.
Chatterjee S, Chattopadhyay A, Senapati SN, Samanta DR, Elliott L, Loomis D, et al.
Cancer registration in India – Current scenario and future perspectives. Asian Pac J Cancer Prev 2016;17:3687-96.
ICMR. National Centre for Disease Informatics and Research. Three-Year Report of Population Based Cancer Registries 2012-2014 Incidence, Distribution, Trends in Incidence Rates and Projections of Burden of Cancer; 2016.
Rath GK, Gandhi AK. National cancer control and registration program in India. Indian J Med Paediatr Oncol 2014;35:288-90.
] [Full text]