Cancer Registry and Burden of cancer

1. Cancer Registry and Burden of cancer Hai-Rim Shin Data Analysis and Interpretation Group

2. Outlines • Cancer Registry • Definition of registry: registration • Types of cancer registries • Essential variables- required • Quality indices: Quality control • Software: CanReg Use of Cancer Registry and cancer control • Cancer Burden • GLOBOCAN project

3. Cancer Registry : Registration Cancer Registry The office or institution which is responsible for the collection, storage, analysis and interpretation of data on persons with cancer. Cancer registration The process of continuing systematic collection of data on the occurrence, characteristics, and outcome of reportable neoplasms with the purpose of helping to assess (prevent) and control the impact of malignant disease in the community.

4. Cancer Registry Types 1. Population based cancer registry (PBCR) 2. Hospital cancer registry 3.Pathology registry

5. Population based Cancer Registry • All cases in a DEFINED population are registered • True (unbiased) profile of cancer in the community incidence, stage distribution, survival, etc. • Calculation of incidence rates (because population at risk is quantified) • The main interest is for epidemiology and public health

6. Hospital based Cancer Registry • Records all cases of cancer treated in a given hospital • The population from which the cases come is not defined • The main interest is clinical care hospital administration

7. Pathology Tumor Registry • Collects information from one or more laboratories on histologically diagnosed cancers • The population from which the tumour tissue has come is not defined • The information - has high diagnostic quality - but is difficult to generalize

8. Data Sources  1. Med Records Dept  2. Outpatient clinic  3. Pathology lab  4. Hematology lab  5. Radiol Oncology  6. Diagnostic Rad  7. Health Insurance  8. Screening  9. Death certificates 10. Autopsy 11. Others

9. Basic information required and variable definitions

10. HOSPITAL CANCER REGISTRYAdditional variables • Contact details • Admission + Discharge dates • Hospital referred from , to • Physicians (treating, following) • Diagnostic procedures • Extent of disease • Treatment details (first, subsequent) • Outcome (recurrence) • Follow - up

11. Most valid basis of diagnosis of cancer • Non-microscopic • Clinical only • Clinical investigation (including X-ray, ultrasound, etc) • Exploratory surgery/autopsy • Specific biochemical and/ or immunological tests

12. Hepatocellular carcinoma Most valid basis of diagnosis of cancer • Microscopic • Cytology or haematology • Histology of metastasis • Histology of primary • Autopsy with concurrent or previous histology • Unknown • Death Certificate Only (DCO)

13. Quality : Quality Control Quality of Data The registry data – reliable and of good quality Should be complete, consistent and accurate Quality Control The mechanism by which the quality of data can be assessed * a formal ongoing programme * ad hoc survey to assess completeness and consistency of case finding, abstracting, and coding as well as the accuracy of reporting

14. Evaluation of data quality in the cancer registry • Completeness • Comparability • Validity or accuracy • Timeliness

15. Completeness • The extent to which all of the incident cancers occurring in the population are included in the registry database • Coverage

16. Comparability • The system used for classification and coding of neoplasms; • The definition of incidence, i.e. what is defined as a case, and what is the definition of the incidence date; • The distinction between a primary cancer (new case) and an extension, recurrence or metastasis of an existing one (multiple primary); • The recoding of cancers detected in asymptomatic individuals

17. International standards for classification and coding of neoplasm 1. ICD-O-3 (2000, WHO) Topography: location of the tumour in the body (T code: C16) Morphology: microscopic appearance and cellular origin of the tumor (M code: 8000) Behavior: whether the tumour is malignant, benign, in situ or uncertain (/3) Grade: the extent of defferentiation of tumour A standard coding scheme is also provided for recording the basis of diagnosis of cancers Comparability

18. Date of diagnosis: Incidence date • SEER Program Coding and Staging Manual 2007 (pp 61-64) • ENCR, 1999 • Standards recommended for the definitions of incidence • 1.Date of first histological or cytological confirmation • 2. Date of admission to the hospital • 3. Date of first evaluation (outpatient clinic) • 4. Date of diagnosis other than 1,2,3 • 5. Date of death, if no information is available • 6. Date of death – at autopsy Comparability

19. Multiple primaries IARC Multiple Primary Rule (2000 and 2004) International rules for multiple primary cancers ICD-O-3rd ed 2004. IARC Internal Report No. 2004 /02

20. Incidental diagnosis Incidental diagnosis refers to the detection of cancer incidentally 1. Screen detected cancers Aim of screening : to detect cancers that are asymptomatic at an earlier stage - increasing with prevalent cancers - tend reduce incidence rates of colon and cervix cancer via the removal of premalignant lesions 2. Autopsy diagnosis ? In Asia Comparability

21. Validity (accuracy) 1. Re-abstracting and recoding 2. Histological verification the index of validity: the percentage of cases morphologically verified 3. Death Certificate Only (DCO) 4. Missing information 5. Internal consistency: IARC, IACR CHECK program

22. Death Certificate Only (DCO) means those cancers for which no other information than a death certificate mentioning cancer could be obtained. This must not be confused with the cases first notified by a death certificate (death certificate notification - DCN). Office for “Death Certificates” in terms of storage (record keeping)?

23. Timeliness • Rapid reporting of information on cancer cases is another priority • There are no international guidelines for timeliness at present, but • North American agencies have set out specific standards for the relevant registries • SEER: with 22 month of the end of the diagnosis year

24. Data quality and Comparability Criteria CI5 vol IX

25. Software for registration Cancer registries need a tool to input, store, check and analyze their data. Cancer registration data that are collected and coded in a standard way make possible the production of comparable cancer incidence among various countries.

26. CanReg5 The goal of the CanReg5 project is to make available an easy to use and flexible software package to support cancer registries in accomplishing these tasks. CanReg5 contains modules for: data entry quality control basic analysis of the data Provides online help Currently beta version Responsible Officer: Ervic Morten, DEP

27. Multiple Document Interface

29. Purposes and Uses of Cancer Registration 1 Epidemiological Research Descriptive Epidemiology Analytic Epidemiology 2 Health Care Planning and Monitoring Patient Care Survival Screening Prevention

30. Use of Cancer Registry data • Analyses of cancer registry data • Record linkage studies • Sources of cases for case-control studies • Source of reference rates

31. Analysis of cancer registry data • Geographical variations • Time trends • Analyses by sex and ethnic group • Analysis of other risk factors occupation place of birth civil status religion

32. Patients/Family Policy makers /Researchers Information Cancer Statistics refining Supports Calculation Estimation Legislation (Act) Budget (Finance) Administration Collaboration Supports Technically Financially Central CR Regional CR Site-spec CR Insurance info NSO etc Roles Ministry of Health Ministry of Administration Ministry of Law IARC/IACR

33. Early Detection Treatment Cancer Control Program Palliative Care Prevention WHO National Cancer Control Program : a systemic and comprehensive approach

34. National Cancer Control Program : a systemic and comprehensive approach Early Detection Treatment Cancer Control Program Palliative Care Prevention The cancer registry an essential part of cancer control program

35. National Cancer Control WHO, 2002 • 1/3: Prevention • Anti-smoking campaign • HBV vaccination • 1/3: Early detection • Screening • 1/3: Palliative care Add effective distribution of therapeutic resources and research

37. NAACCR ENCR Asia? (APOCP) MECC South America Africa The activities in the cancer registry are universal.

38. Outlines • Cancer Registry • Definition of registry: registration • Types of cancer registries • Essential variables- required • Quality indices: Quality control • Cancer Burden • GLOBOCAN project

39. Burden of Cancer • Incidence, Mortality, Morbidity (Prevalence): by site, age group, sex • Summary measurements: DALY (disability adjusted life year), YLLs (years life lost due to premature death), YLD (years lived with disability), HeaLY (healthy life years lost), etc • Economic burden: Medical cost, non-Medical cost

40. Estimate of the Global Burden of Cancer: The GLOBOCAN project The aim of the GLOBOCAN project is to provide contemporary estimates of the incidence of, and mortality from the major types of cancer, at national level, for every country in the world. GLOBOCAN 2008 in Feb 2010 Members of Editorial board: Jacques Ferlay, Hai-Rim Shin (DEA, IARC) Max Parkin, Fraddie Bray (Cancer team for GBD) Coli Mathers (WHO HQ)

41. Estimate fo the Global Burden of Cancer: The GLOBOCAN project • Data sources (1) • Incidence and survival data: • Provided by cancer registries thru the International Association of Cancer Registries (IACR) • Mostly regional. • Not always recent (generally 5 year late): request time to be compiled and published. • Detailed information (site, histology, laterality, grade, stage).

42. Coverage of cancer registration worldwide % of the population covered (around 2000) 40.0 99.0 19.0 7.1 7.9 13.0 82.0 16.5% total

43. Preparing National Incidence Estimates National incidence data Mortality data Regional incidence data Relative frequency No data (Modelling) (Weighting) (Frequency) Average

44. Data sources (2) • Mortality data (number of death from cancer): • National level • Provided by the WHO • Recent and available for long time periods (1950 to 2008). • Limited number of cancers. • Quality can be poor (under-reporting, coverage- not full, high percentage of ill-defined causes of deaths etc.)

45. Mortality data (WHO databank) % of the population covered (around 2005) 98.0 100.0 100 9.0 13.8* 95.0 76.5 33% total *Egypt and South-African Republic

46. Preparing National Mortality Estimates National mortality data Regional mortality data No data (Weighting) Incidence+ Survival

47. The results are presented for 170 countries of the world, plus build-in areas (six WHO regions, more and less developed countries and the world) Data available for 27 major cancers, for men and women, and for 5 age groups: 0-14,15-44,45-54,55-64,65+ Accessible thru the Internet or using a Windows-based PC software

48. Incidence Mortality New cancer cases and deaths, World 2002 (10.8 million cases/6.7 million deaths) Males 5.8 million cases 3.8 million deaths Females 5.0 million cases 2.9 million deaths Lung (1.35/1.18) Breast (1.15/0.41) Colon/Rectum (1.0/0.53) Stomach (0.93/0.70) Prostate (0.68/0.22) Liver (0.63/0.60) Cervix uteri (0.49/0.28) Oesophagus (0.41/0.34) Bladder (0.35/0.14) Non-Hodgkin lymphoma (0.30/0.16) Leukaemia (0.28/0.20) Oral cavity (0.27/0.12) Pancreas (0.23/0.22) Kidney (0.21/0.11) Ovary (0.20/0.12) 1000 800 600 400 200 0 200 400 600 800 1000 (Thousands)

49. 965,000 cases in 2002

50. 1.15 million cases in 2002