Cancer registration and challenges in india

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  • Cancer registration and epidemiologic principles lay the foundations for evidence based scientific cancer research, determining risk factors, assessing control measures and evaluating patterns of clinical care
  • Januar 1 1982
  • (staff of all registries visit hospitals, pathology laboratories and all other sources of registration of cancer cases on a routine basis). information collected on all cases where cancer is mentioned on the death certificates.
  • Data quality and completeness of coverage is a prime requisite for good cancer registration
  • 11-u, 2-R, 12-mixed , The historical development of population-based cancer registration has been described by Wagner77. Although what
    constitutes a true population-based cancer registry (PBCR) could be debated, it is clear that the earliest registries that
    attempted to cover defined populations using multiple-source reporting were in Hamburg (established in 1927), New York
    (1940), Connecticut (1941) and Denmark (1942). A WHO (World Health Organization) subcommittee on “the registration of
    cases of cancer” was set up in 1950, and provided the first set of methodological guidelines for cancer registration78. At the
    International Symposium on Geographical Pathology and Demography of Cancer, arranged by the International Union
    Against Cancer (UICC) in 1950, the need for enumeration of all new cases of cancer in a defined geographic area was
    emphasized, and a Committee on Geographic Pathology was established79. From this initiative emerged the first volume of
    the Cancer Incidence in Five Continents series1. (covers 7.45% population of India/30 geographical areas). Compared to 2006-2008, data from 4 new centres (Wardha, Meghalaya, Nagaland, Tripura) was also added
  • first PBCRs established over- 60 years ago In 1966, 32 registries reported their results in volume I of Cancer Incidence in Five Continents, and 40 years later, there were 449 members of the International Association of
  • Records Missing County
    Duplicate Rate per 1,000
    ≤2.0%
    ≤1.0
    ≤3.0%
    ≤2.0
    Not applicable
    Not applicable
  • Cancer registration and challenges in india

    1. 1. Bulletin of the World Health Organization, Sept. 2011;89:640–647 Impact Factor 5.3 Centre for Community MedicineCentre for Community Medicine All India Institute of Medical Sciences, New DelhiAll India Institute of Medical Sciences, New Delhi Cancer Registration and its Challenges in India 25/07/2014 1/ 38 Presenter Dr. Priyamadhaba Behera Preceptor Dr Archana
    2. 2. References • http://www.ncrpindia.org • http://www.hbcrindia.org • http://www.pbcrindia.org • http://www.canceratlasindia.org • NCRP-Three-Year Report of Population Based Cancer Registries 2009-2011 • NCRP-Consolidated Report of Hospital Based Cancer Registries 2007-2011 • Time Trends in Cancer Incidence Rates 1982-2010 • Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991) 2/ 38
    3. 3. Outlines of presentation • Introduction • National Cancer Registry Programme • Population Based Cancer Registry • Hospital Based Cancer Registry • Atlas of Cancer in India • Critical appraisal 3/ 38
    4. 4. Introduction • Systemic collection of data on the occurrence and characteristic of neoplasm (Mclennan et al 1978) • Cancer registration is central to national cancer control programme (Muir, C.S. 1985) 4/ 38
    5. 5. Introduction • Worldwide-14.1 million new cases and 8.2 million cancer-related deaths in 20121 • By 2030 new cancer cases will increase to 21.7 million, and the cancer-related deaths to 13 million globally • 13 million of the new cancer cases and 9 million of the deaths will occur in less developed regions • 2.5 million cancer cases and 0.7 million new cases/year in India2 1.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT 2. http://nihfw.nic.in/ndc-nihfw/html/Programmes/NationalCancerControlProgramme.htm 5/ 38
    6. 6. 6/ 38 Epidemiologic principles lay the foundations for evidence based scientific cancer research, determining risk factors,
    7. 7. Introduction Continued • Extraordinary resources of information for clinicians, researchers, scientists, policy makers, and the public in our fight against cancer1 • Identifying High-Risk Groups • Increasing Screening in Underserved Areas • Investigating Possible Cancer Causes • Evaluating patterns of clinical care Das A et al “Cancer registry databases: an overview of techniques of statistical analysis and impact on cancer epidemiology.Methods”. Mol Biol. 2009;471:31-49. 7/ 38
    8. 8. 8/ 38.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT
    9. 9. History of cancer registration in India • Until 1964- information on cancer occurrence in India was available from surveys • Initiation of population based cancer registries  Bombay in 1964  Pune in 1973  Aurangabad in 1978  Ahmedabad & Nagpur in 1980 9/ 38
    10. 10. National Cancer Registry Programme • Commenced by ICMR with a network of cancer registries across the country in December 19812 • Started with three PBCR -Bangalore, Chennai and Mumbai and three HBCR -Chandigarh, Dibrugarh and Thiruvananthapuram • Now there are 28 PBCR and 7 HBCR sites in India 2.http://www.ncrpindia.org 10/ 38
    11. 11. National Cancer Registry Programme Continued Objectives of this programme • To generate reliable data on the magnitude and patterns of cancer • Undertake epidemiological studies based on results of registry data • Help in designing, planning, monitoring and evaluation of cancer control activities under the National Cancer Control Programme (NCCP) • Develop training programmes in cancer registration and epidemiology 11/ 38
    12. 12. 12/ 38
    13. 13. National Cancer Registry Programme Continued • Steering Committee and a Monitoring Committee- meets periodically to oversee and guide –functioning • A review meeting is held annually -Principal Investigators and staff of the registries present results and participate in the discussions-preceded by a workshop • Cancer registration in India is active • Death certificates are also scrutinized from the municipal corporation units 13/ 38
    14. 14. National Cancer Registry Programme Continued • Information collected on a core form -subsequently entered into a computer • Use modern advances in electronic information technology (enter the checking of the data, verification of duplicates and matching mortality and incidence records) • Electronic processing of data -tried out in some registries 14/ 38
    15. 15. Population Based Cancer Registries • Basic thrust of a PBCR is cancer in community • PBCR provides - data on incidence and mortality (also variation in incidence and mortality) • Three new centers Patiala, Naharalagun,Pasighat has started • Good PBCR requires  Meticulous planning  Cooperation from medical institutes  Dedicated personal and adequate funding 15/ 38
    16. 16. Population Based Cancer Registries Continued 16/ 38
    17. 17. Population Based Cancer Registries Continued • Data collection- Facilities Clinician and pathologist Death certificate 17/ 38
    18. 18. Population Based Cancer Registries Continued Essential variables1 • Personal identification (names (in full) and/or unique • Sex • Date of birth or age • Address (usual residence) • Ethnic group (when the population consists of two or more groups) • Most valid basis of diagnosis (enables cases to be registered with a non-histological diagnosis) • Topography (site) of primary cancer • Tumour morphology (histology) • Tumour behaviour (benign, uncertain, in situ or malignant) • Source of information 1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991). 18/ 38
    19. 19. Population Based Cancer Registries Continued Recommended variables1 • Date of last contact • Status at last contact (at least dead or alive) • Stage or extent of disease at diagnosis • Initial treatment 1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991). 19/ 38
    20. 20. Flow chart showing working of Delhi cancer registry Sources Radiotherapy Deptt. Pathology Deptt.Medical Record Deptt. Vital/Stat. NDMC/MCD Resident Name, Age, Sex, Treat. Topo,Morph. & Add. NR NR NRName, Age Sex, Topogrphy, Morphology (App. 40,000) Arranged Alpha. Arranged Alpha.Arranged Alpha. Arranged Dictio. Matching Coding Data Entry Resident Name, Age, Sex, Treatment ICD.9 or ICD.10 & Add. Resident Name, Age, Sex, casuse of death & Add. 20/ 38
    21. 21. Data Entry Sorting of data by Sex, Name, Address & disease wise Removing of duplicates within the current year & previous years Estimation & standardization of population with world population Generating tables, calculating of CR, ASR, AAR, for Morb. & Mort. Data Report Writing Flow chart showing working of Delhi cancer registry (Cont….) 21/ 38
    22. 22. Hospital Based Cancer Registries • The primary purpose -to contribute to patient care by providing readily accessible information on the patients • Data - used for clinical research and for epidemiological purposes • Within the hospital, a registry - integral part of the hospital’s cancer programme or health care delivery system 22/ 38
    23. 23. Hospital Based Cancer Registries Continued Objectives (Maclennan et al, 1978; Young, J.L. 1991) GENERAL: -Assess Patient Care -Participate in Clinical Research to Evaluate Therapy -Provide an idea of the patterns of cancer in the area -Help plan hospital facilities 23/ 38
    24. 24. Hospital Based Cancer Registries Continued • Data collection is done by the individual registries using a standardized common core form • The information of patient  Identifying and demographic information  Details of diagnosis the clinical stage of the disease  Broad type of treatment instituted 24/ 38
    25. 25. 25/ 38
    26. 26. Development of an Atlas of Cancer in India • A major advance for using Information Technology in Medicine • Web-based design and approach with on-line transmission • Unlike the working of PBCRs, no systematic attempt was made to actively visit every diagnostic and treatment centre 26/ 38
    27. 27. Development of an Atlas of Cancer in India • Strengthening of departments of pathology Providing orientation/ training in cancer registration • Cost-effective 27/ 38
    28. 28. Data entry screen from Cancer Atlas website 28/ 38
    29. 29. Critical appraisal-1 • Coverage of population based cancer registry (only 7.5%) in India is low1 • Cancer Registries covering 21% of the world population2 • Less in rural (2 wholly rural) and tribal (0) area 1.NCRP-Three-Year Report of Population Based Cancer Registries 2009-2011 2.Parkin DM.The evolution of the population-based cancer registry.Nat Rev Cancer.2006 Aug;6(8):603-12 29/ 38
    30. 30. Critical appraisal -2 • Quality check. Few indicators of quality check are still far from good quality data Age unknown Unknown duration of stay Microscopic verification Clinical extent of disease before treatment Unspecified site/subsite Unspecified histology 30/ 38
    31. 31. Critical appraisal -3 • Linkage of various data (patient level, local level and national level) needs to be improved e.g English National Cancer Online Registration Environment (EnCORE) • Real time data entry 31/ 38
    32. 32. English National Cancer Online Registration Environment (EnCORE) 32/ 38
    33. 33. English National Cancer Online Registration Environment (EnCORE) Are patients following local treatment guidelines? 33/ 38
    34. 34. Critical appraisal -4 • Shortage of manpower • Interviewing the patient becoming difficult due to time convience • Lacking of ICD proper coding in many hospitals • Laborious and time-consuming process for going through all records and death certificate • New Private hospitals providing soft copy but not hard copy of patient 34/ 38
    35. 35. Critical appraisal -5 • Numerator in PBCR, is questionable Under-reporting is common Facilities/Clinician and pathologist  Depends upon the health care seeking behaviour Death certificate Quality and maintenance of death certificate 35/ 38
    36. 36. Critical appraisal -6 Method Cost/case registration (in Rupees) PBCRs of the ICMR in Urban area 350 PBCRs of the ICMR in Rural area 4500 Cancer Atlas Project 24 Cost-effectiveness 36/ 38
    37. 37. Critical appraisal -7 • Co-ordination with District Cancer Control Programme may be vital PHC,CHC, Regional cancer centre (19) Wings of cancer control (241)-helps to bridge geographical barrier District hospital CHC PHC 37/ 38
    38. 38. Critical appraisal -8 Reach at primary level Do we really need a cancer registry to reach primary level? Histopathology and staging of cancer-tertiary care hospital • Role of ASHA, ANM, information assistant • Data quality, duplication of data, increasing work burden will be a issue 38/ 38
    39. 39. 39 THANK YOU 39
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    51. 51. Standard Complete ness of Case Ascer- tainment Records Passing Edits* Death Certificate Only Records Missing Age Records Missing Sex Records Missing Race Months After End of Diagnosis Year National Data Quality Standard ≥95% ≥99% ≤3.0% ≤2.0% ≤2.0% ≤3.0% 23–24 Advanced National Data Quality Standard ≥90% ≥97% Not applicable ≤3.0% ≤3.0% ≤5.0% 12–13 USCS Publication Standard ≥90% ≥97% ≤5.0% ≤3.0% ≤3.0% ≤5.0% 23–24 Comparison of NPCR Program Standards (USA) 51
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    57. 57. Evolution of NCCP 1975-76 National Cancer Control Programme was launched with priorities given for equipping the premier cancer hospital/institutions. Central assistance at the rate of Rs.2.50 lakhs was given to each institution for purchase of cobalt machines. 1984-85 The strategy was revised and stress was laid on primary prevention and early detection of cancer cases. 1990-91 District Cancer Control Programme was started in selected districts (near the medical college hospitals). 2000-01 Modified District Cancer Control programme initiated. 2004 Evaluation of NCCP was done by National Institute of Health & Family Welfare, New Delhi. 2005 The programme was further revised after evaluation. 57

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