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Cancer (clinical) DSS (Data Set Specification)

This item has been superseded by a newer version by one or more Registration Authorities.

Definition

This Cancer (clinical) data set specification is not mandated for collection but is recommended as best practice if cancer clinical data are to be collected.

The Cancer (clinical) data set underpins the evaluation of cancer treatment services and this can occur at a number of levels; the individual clinician, the health care institution, at state or territory level and ultimately at a national level.

Clinicians use such data for ongoing patient management and the ability to link patient management to outcomes allows treatments or outcomes to be identified and assessed. Institutions can monitor through-put in their centres for planning and resource allocation purposes to obtain optimum return for cancer expenditure. End-points can be monitored to ensure that objectives are being met.

The principal aim of good-quality and consistent data is to provide information that can lead to improved quality and length of life for all patients by providing a systematic foundation for evidence-based medicine, informing quality assurance and improvement decisions and guiding successful planning and evaluation of cancer control activities.

Metadata items in this Data Set Specification

Below is a list of all the components within this Dataset Specification.
Each entry includes the item name, whether the item is optional, mandatory or conditional and the maximum times the item can occur in a dataset.
If the items must occur in a particular order in the dataset, the sequence number is included before the item name.

Components Statuses Inclusion #
Data Elements
0 Cancer staging—cancer staging scheme source edition number, code N[N]
  • [Health: Superseded]
mandatory 1
1 Cancer staging—cancer staging scheme source, code N
  • [Health: Superseded]
mandatory 1
2 Cancer staging—staging basis of cancer, code A
  • [Health: Superseded]
mandatory 1
3 Cancer treatment—cancer treatment type, code N
  • [Health: Superseded]
mandatory 1
4 Cancer treatment—intention of treatment, code N
Specific Information:

It is used for correlating outcome with original intent of the treatment.

  • [Health: Retired]
mandatory 1
5 Cancer treatment—non-surgical cancer treatment completion date, DDMMYYYY
Specific Information:

This field must:

  • be greater than or equal to the date of initial cancer diagnosis, and
  • be greater than or equal to the date of the initial course of treatment for cancer.

This item is collected for the analysis of outcome by treatment type.

Collecting dates for radiotherapy treatment and systemic therapy agent treatment will allow evaluation of treatments delivered and of time intervals from diagnosis to treatment, from treatment to recurrence and from treatment to death.

  • [Health: Retired]
mandatory 1
6 Cancer treatment—non-surgical cancer treatment start date, DDMMYYYY
Specific Information:

This field must:

  • be greater than or equal to the date of initial cancer diagnosis, and
  • be less than or equal to the date on which initial treatment for cancer was completed.

This metadata item is collected for the analysis of outcome by treatment type.

Collecting dates for radiotherapy treatment and systemic therapy agent treatment will allow evaluation of treatments delivered and of time intervals from diagnosis to treatment, from treatment to recurrence and from treatment to death.

  • [Health: Retired]
mandatory 1
7 Cancer treatment—outcome of treatment, code N.N
Specific Information:

This item is collected for assessing disease status at the end of primary treatment.

  • [Health: Superseded]
mandatory 1
8 Cancer treatment—radiation dose received, total Gray N[NNNN]
Specific Information:

This item is collected for the analysis of outcome by treatment type.

  • [Health: Superseded]
mandatory 1
9 Cancer treatment—radiotherapy treatment type, code N
Specific Information:

This metadata item is collected for the analysis of outcome by treatment type.

  • [Health: Superseded]
mandatory 1
10 Cancer treatment—surgical procedure date, DDMMYYYY
Specific Information:

This field must be greater than or equal to the date of initial cancer diagnosis.

This item is collected for analyses of outcome by treatment type.

  • [Health: Superseded]
mandatory 1
11 Cancer treatment—surgical procedure for cancer, procedure code (ICD-10-AM 3rd edn) NNNNN-NN
Specific Information:

This item is collected for determining outcome by treatment type.

  • [Health: Superseded]
mandatory 1
12 Cancer treatment—systemic therapy agent name (primary cancer), antineoplastic drug code (Self-Instructional Manual for Tumour Registrars Book 8 3rd edn) X[X(39)]
Specific Information:

This item is collected for the analysis of outcome by treatment type.

  • [Health: Superseded]
mandatory 1
13 Cancer treatment—target site for cancer treatment, code (ICD-10-AM 3rd edn) ANN{.N[N]}
  • [Health: Superseded]
mandatory 1
14 Cancer treatment—target site for cancer treatment, code (ICDO-3) ANN
  • [Health: Retired]
mandatory 1
15 Establishment—organisation identifier (state/territory), NNNNN
  • [Health: Standard]
  • [ National Health Performance Authority: Standard]
mandatory 1
16 Patient—diagnosis date (cancer), DDMMYYYY
  • [Health: Superseded]
mandatory 1
17 Patient—diagnosis date (first recurrence of cancer), DDMMYYYY
Specific Information:

This field must:

  • be greater than the date of diagnosis of cancer
  • be greater than the cancer initial treatment - completion date (if less than cancer initial treatment - completion date, the patient was never disease-free)
  • [Health: Standard]
mandatory 1
18 Person (address)—address line, text X[X(179)]
  • [Health: Standard]
  • [Community Services: Standard]
mandatory 1
19 Person (name)—family name, text X[X(39)]
  • [Housing assistance: Standard]
  • [Health: Standard]
  • [Community Services: Superseded]
mandatory 1
20 Person (name)—given name, text X[X(39)]
  • [Housing assistance: Standard]
  • [Health: Standard]
  • [Community Services: Superseded]
mandatory 1
21 Person with cancer—distant metastasis status, M stage (UICC TNM Classification of Malignant Tumours 5th ed) code XX
Specific Information:

For survival analysis adjusted by stage at diagnosis and distribution of cancer cases by type and stage.

  • [Health: Superseded]
mandatory 1
22 Person with cancer—extent of primary cancer, TNM stage (UICC TNM Classification of Malignant Tumours 5th ed) code XXXX{[X]XX}
Specific Information: For survival analysis adjusted by stage at diagnosis and distribution of cancer cases by type and stage.
  • [Health: Superseded]
mandatory 1
23 Person with cancer—histopathological grade, code N
  • [Health: Superseded]
mandatory 1
24 Person with cancer—laterality of primary cancer, code [N]
  • [Health: Superseded]
conditional 0
25 Person with cancer—melanoma thickness (at diagnosis), total millimetres NNN.NN
  • [Health: Standard]
mandatory 1
26 Person with cancer—morphology of cancer, code (ICDO-3) NNNN/N
Specific Information:

This information is collected for the purpose of:

  • classifying tumours into clinically relevant groupings on the basis of both their morphology (cell type) and their degree of invasion or malignancy as indicated by the behaviour code component (the last digit of the morphology code);
  • monitoring the number of new cases of cancer for planning treatment services.
  • [Health: Superseded]
conditional 1
27 Person with cancer—most valid basis of diagnosis of a cancer, code N
Specific Information: Knowledge of the basis of a diagnosis underlying a cancer code is one of the most important aids in assessing the reliability of cancer statistics.
  • [Health: Superseded]
conditional 1
28 Person with cancer—number of positive regional lymph nodes, total N[N]
  • [Health: Superseded]
conditional 1
29 Person with cancer—number of regional lymph nodes examined, total N[N]
  • [Health: Superseded]
mandatory 1
30 Person with cancer—oestrogen receptor assay results, code N
  • [Health: Superseded]
mandatory 1
31 Person with cancer—primary site of cancer, code (ICD-10-AM 3rd edn) ANN{.N[N]}
Specific Information:

This information is collected for the purpose of:

  • classifying tumours into clinically-relevant groupings on the basis of both their site of origin and their histological type
  • monitoring the number of new cases of cancer for planning treatment services
  • epidemiological studies.
  • [Health: Superseded]
mandatory 1
32 Person with cancer—primary site of cancer, code (ICDO-3) ANN{.N[N]}
Specific Information:

This information is collected for the purpose of:

  • classifying tumours into clinically-relevant groupings on the basis of both their site of origin and their histological type
  • monitoring the number of new cases of cancer for planning treatment services
  • epidemiological studies.
  • [Health: Superseded]
conditional 1
33 Person with cancer—primary tumour status, T stage (UICC TNM Classification of Malignant Tumours 5th ed) code XX[X]
Specific Information:

For survival analysis adjusted by stage at diagnosis and distribution of cancer cases by type and stage.

  • [Health: Superseded]
mandatory 1
34 Person with cancer—progesterone receptor assay results, code N
Specific Information: Hormone receptor status is an important prognostic indicator for breast cancer.
  • [Health: Standard]
conditional 1
35 Person with cancer—region of first recurrence of cancer, code N
Specific Information: This item is collected for the analysis of outcome by treatment type.
  • [Health: Standard]
mandatory 1
36 Person with cancer—regional lymph node metastasis status, N stage (UICC TNM Classification of Malignant Tumours 5th ed) code XX
Specific Information:

For survival analysis adjusted by stage at diagnosis and distribution of cancer cases by type and stage.

  • [Health: Superseded]
mandatory 1
37 Person with cancer—solid tumour size (at diagnosis), total millimetres NNN
Specific Information: This is used to measure the diameter of the largest dimension of breast cancers and other solid neoplasms for patient management, population cancer statistics and research.
  • [Health: Superseded]
mandatory 1
38 Person—date of birth, DDMMYYYY
  • [Housing assistance: Standard]
  • [Health: Standard]
  • [Community Services: Standard]
  • [Independent Hospital Pricing Authority: Standard]
  • [Homelessness: Standard]
  • [Early Childhood: Standard]
  • [ National Health Performance Authority: Standard]
mandatory 1
39 Person—date of death, DDMMYYYY
Specific Information: This field must be greater than or equal to Date of diagnosis of primary cancer.
  • [Health: Standard]
  • [Community Services: Standard]
mandatory 1
40 Person—government funding identifier, Medicare card number N(11)
  • [Health: Standard]
  • [Community Services: Recorded]
mandatory 1
41 Person—person identifier, XXXXXX[X(14)]
  • [Health: Standard]
  • [Community Services: Standard]
  • [Independent Hospital Pricing Authority: Standard]
  • [Early Childhood: Standard]
  • [ National Health Performance Authority: Standard]
mandatory 1
42 Person—sex, code N
  • [Housing assistance: Standard]
  • [Health: Standard]
  • [Community Services: Standard]
  • [Independent Hospital Pricing Authority: Standard]
  • [Homelessness: Standard]
  • [Early Childhood: Standard]
  • [ National Health Performance Authority: Standard]
mandatory 1
Data Element Inclusion #

References


This content Based on Australian Institute of Health and Welfare material. Attribution provided as required under the AIHW CC-BY licence.

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