Variables: basic or minimal variables for cancer registration

1. Variables: basic or minimal variables for cancer registration Angela M C Rose, BNR Director Chronic Disease Research Centre, University of the West Indies PAHO/IARC, Port-of-Spain, Trinidad, April 2010

2. Overview • Notification form • Essential data information for cancer registration • Basic variables • Optional variables PAHO/IARC, Port-of-Spain, Trinidad, April 2010

3. Notification form: Patient identification • Essential data (patient) • Registration number • Name, ID number • Sex • Age, date of birth • Address PAHO/IARC, Port-of-Spain, Trinidad, April 2010

4. Registration number • Assigned by cancer registry to each patient • based on date of diagnosis • “2003100000” • Primary tumours can be distinguished by site, morphology and incident data PAHO/IARC, Port-of-Spain, Trinidad, April 2010

5. Name • Full name essential • must be obtained from national ID card • abbreviations not recommended • change of name (common for woman after marriage) • record maiden name • Name of mother (some countries) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

6. Sex • Usually entered in hospital records • May not be recorded by other sources • Suggested codes • Male: 1 • Female: 2 • Other: 3 • Unknown: 4 PAHO/IARC, Port-of-Spain, Trinidad, April 2010

7. Date-of-birth, age • Very important for patient identification • For international comparability, convert date to standard (dd, mm, yyyy) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

8. Address • Useful for patient identification • Essential to identify residents vs non-residents • Required for patient follow-up • Should be patient’s usual residence • Note that sometimes, address in area may be given to qualify for free hospital treatment PAHO/IARC, Port-of-Spain, Trinidad, April 2010

9. Tumour information • Incidence date • Most valid diagnosis • Site of primary • Morphology • Behaviour • Source of information PAHO/IARC, Port-of-Spain, Trinidad, April 2010

10. Tumour information • Incidence date • Date first consultation at or admission to, a hospital, clinic or institution for cancer diagnosis and treatment • or • Date first diagnosis by physician or date first pathology report (mentioning cancer) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

11. Tumour information • Other circumstances (incidence date) • Distinction between • recurrence • extension of an existing cancer • development of new primary PAHO/IARC, Port-of-Spain, Trinidad, April 2010

12. Tumour information • Other circumstances (incidence date) • Detection of cancers incidentally (i.e. in asymptomatic individuals), e.g. during • screening examinations • microscopy for tissue removed from non-cancer condition • during autopsy examinations (unsuspected when alive) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

13. Tumour information • Most valid diagnosis • The most conclusive is microscopy • - initial histological verification of primary site • Minimal requirement for cancer registry • differentiation between neoplasms verified microscopically and those that are not PAHO/IARC, Port-of-Spain, Trinidad, April 2010

14. Tumour information • Most valid diagnosis • Availability of morphological diagnosis is dependent upon several factors • age • accessibility of the tumour • availability of medical services • attitude and beliefs of the patient PAHO/IARC, Port-of-Spain, Trinidad, April 2010

15. Tumour information • Most valid diagnosis • A biopsy of the primary tumour should be distinguished from • a biopsy of a metastasis PAHO/IARC, Port-of-Spain, Trinidad, April 2010

16. Tumour information • Cytology • Microscopic diagnosis is based on examination of cells • e.g. cervix, fine needle aspirations from breast, bone marrow PAHO/IARC, Port-of-Spain, Trinidad, April 2010

17. Tumour information • Histology of primary • Microscopic diagnosis based on tissue specimen taken during biopsy or surgery resection • from the site of the origin of the tumour PAHO/IARC, Port-of-Spain, Trinidad, April 2010

18. Tumour information • Histology of metastasis • Microscopic diagnosis based on tissue specimen taken during biopsy or surgery resection • from a secondary or metastatic site • Cannot enter into registry without data on primary tumour • sometimes cannot find this info.: “unknown primary” (<1%) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

19. Tumour information • Most valid diagnosis unknown • If the basis of cancer diagnosis is not specified, and • It is not known whether the case is microscopically verified or not • e.g. radiotherapy clinics PAHO/IARC, Port-of-Spain, Trinidad, April 2010

20. Tumour information • Most valid diagnosis: death certificate only • Cases registered for which the only information on cancer was on a death certificate, and where follow-up attempts (to trace patient record) have been unsuccessful • Should be <10% (but for early registry may be as much as 20%) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

21. Tumour information • Site of primary • Detailed topography of the tumour is the most important data collection item • Location of the tumour should be written as specifically as possible • e.g. Primary tumour of the left upper lobe of the lung (ICDO-3) • ICD-O3: topography is coded regardless of the behaviour of the tumour PAHO/IARC, Port-of-Spain, Trinidad, April 2010

22. Examples of data collection forms PAHO/IARC, Port-of-Spain, Trinidad, April 2010

25. Martinique dataset • Name, sex, DoB, Profession, Address at diagnosis • inclusion criteria: must have been living in MQE for at least 6 months • Date last seen & Reason for last medical visit • Dead? If yes, Date death • Validation by (signature of Director); Date • Date first declared as having cancer; Source • Treating physician or institution; Hospital ID # • Path/histo lab ID number (rarely completed) • Date cancer confirmed (by biopsy etc.) PAHO/IARC, Port-of-Spain, Trinidad, April 2010

26. Mode of diagnosis – 10 options • Clinical only • Clinical and paraclinical • i.e. mammogram or other non-pathology tests • Exploratory surgery during autopsy • Biological • Cytological • Histology on metastasis • Histology on primary tumour or histology not otherwise defined • Autopsy with histology • Unknown or other • Death certificate only PAHO/IARC, Port-of-Spain, Trinidad, April 2010

27. Site: Primary • - else indicate “primary unknown”; site code C_ _._ • Histology; code M_ _ _ _ _ • Grade; Metastases (coded 1, 2 or 3) • Clinical stage; Code (1, 2 or 3) • TNM Code • only for prostate, breast, cervix and colon • Side • right, left, bilateral, not applicable, unknown • Notes/comments PAHO/IARC, Port-of-Spain, Trinidad, April 2010

28. Summary • Be sure you have access to all data sources • Plan and decide on minimum dataset • Abstract data accurately • name, date-of-birth, address • incidence date • histology, cytology, clinical, imaging 28 PAHO/IARC, Port-of-Spain, Trinidad, April 2010

29. Acknowledgements • Veronica Roach • Maria Paula Curado PAHO/IARC, Port-of-Spain, Trinidad, April 2010