Variables basic or minimal variables for cancer registration
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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. Overview. Notification form Essential data information for cancer registration

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Variables basic or minimal variables for cancer registration

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


Overview

Overview

  • Notification form

    • Essential data information for cancer registration

    • Basic variables

    • Optional variables

PAHO/IARC, Port-of-Spain, Trinidad, April 2010


Notification form patient identification

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

Tumour information

  • Incidence date

  • Most valid diagnosis

  • Site of primary

  • Morphology

  • Behaviour

  • Source of information

PAHO/IARC, Port-of-Spain, Trinidad, April 2010


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

Examples of data collection forms

PAHO/IARC, Port-of-Spain, Trinidad, April 2010


Variables basic or minimal variables for cancer registration

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


Variables basic or minimal variables for cancer registration

  • 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


Variables basic or minimal variables for cancer registration

  • 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


Summary

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


Variables basic or minimal variables for cancer registration

Acknowledgements

  • Veronica Roach

  • Maria Paula Curado

PAHO/IARC, Port-of-Spain, Trinidad, April 2010


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