1 | Main language other than English spoken at home | Number
[4]
| NN{NN} The Australian Standard Classification of Languages (ASCL 2011) code set representing languages. | |
2 | Setting of death | Number
[2]
| 1 | Private home | 2 | Hospice | 3 | Treating hospital | 4 | Other hospital | 88 | Other setting | 98 | Not applicable - patient alive | 99 | Not stated/inadeqately described - patient has died but location inadequately stated |
| Conditional obligation: Recorded for persons who have died. |
3 | First degree relative cancer history indicator | Number
[1]
| 1 | Yes | 2 | No | 7 | Not applicable | 8 | Unknown | 9 | Not stated/inadequately described |
| |
4 | Second degree relative cancer history indicator | Number
[1]
| 1 | Yes | 2 | No | 7 | Not applicable | 8 | Unknown | 9 | Not stated/inadequately described |
| |
5 | Hereditary genetic events family history indicator | Number
[1]
| 1 | Yes | 2 | No | 8 | Unknown | 9 | Not stated/inadequately described |
| |
6 | Hereditary genetic events type code | Number
[2]
| 1 | Peutz-Jehgers syndrome | 2 | B-Raf mutation | 3 | Undescended testes | 4 | Von Recklinghausen syndrome | 5 | Xeroderma pigmentosa | 6 | Bloom syndrome | 7 | Ataxia telangiectasia | 8 | Beckwith-Wiedemann syndrome | 9 | Down syndrome | 10 | Klinefelter syndrome | 11 | Neurofibromatosis type I (NF-1) | 12 | Von Hippel–Lindau disease (VHL) | 13 | RET proto-oncogene | 14 | Adenomatous polyposis coli (APC) | 15 | Hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome) | 16 | Breast cancer gene 1 (BRCA1) | 17 | Breast cancer gene 2 (BRCA2) | 18 | Neurofibromatosis | 19 | Li-Fraumeni syndrome | 20 | Fanconi anaemia | 88 | Other genetic events or syndromes | 97 | No genetic events or syndromes | 98 | Unknown | 99 | Genetic event or syndrome recorded but type inadequately described |
| Conditional obligation: Complete if Person with cancer—family history of hereditary genetic events indicator, yes/no/unknown/not stated/inadequately described code N equals 'yes'. |
7 | Hereditary genetic events type description | String
[40]
| X[X(39)] A combination of alphanumeric characters. | Conditional obligation: Complete if Person with cancer—family history of hereditary genetic events indicator, yes/no/unknown/not stated/inadequately described, code N equals 'yes' and Person with cancer—hereditary genetic events type, code N[N] equals 'other'. |
8 | Personal genetic syndrome indicator | Number
[1]
| 1 | Yes | 2 | No | 8 | Unknown | 9 | Not stated/inadequately described |
| |
9 | Personal genetic syndrome type | Number
[2]
| 1 | Peutz-Jehgers syndrome | 2 | B-Raf mutation | 3 | Undescended testes | 4 | Von Recklinghausen syndrome | 5 | Xeroderma pigmentosa | 6 | Bloom syndrome | 7 | Ataxia telangiectasia | 8 | Beckwith-Wiedemann syndrome | 9 | Down syndrome | 10 | Klinefelter syndrome | 11 | Neurofibromatosis type I (NF-1) | 12 | Von Hippel–Lindau disease (VHL) | 13 | RET proto-oncogene | 14 | Adenomatous polyposis coli (APC) | 15 | Hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome) | 16 | Breast cancer gene 1 (BRCA1) | 17 | Breast cancer gene 2 (BRCA2) | 18 | Neurofibromatosis | 19 | Li-Fraumeni syndrome | 20 | Fanconi anaemia | 88 | Other genetic events or syndromes | 97 | No genetic events or syndromes | 98 | Unknown | 99 | Genetic event or syndrome recorded but type inadequately described |
| Conditional obligation: Complete if Person with cancer—personal genetic syndrome indicator, yes/no/unknown/not stated/inadequately described, code N equals 'yes'. |
10 | Personal genetic syndrome type description | String
[40]
| X[X(39)] A combination of alphanumeric characters. | Conditional obligation: Complete if Person with cancer—personal genetic syndrome indicator, yes/no/unknown/not stated/inadequately described code N equals 'yes' and Person with cancer—personal genetic syndrome type, code N[N] equals 'other genetic events or syndromes'. |
11 | Date of cancer symptom onset | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | |
12 | Date of initial primary health care consultation | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | |
13 | Date of initial medical specialist consultation | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | |
14 | AYA cancer treatment provider type | Number
[2]
| 1 | Specialist adolescent or young adult with cancer centre or team | 2 | Cancer centre | 3 | Paediatric cancer centre | 4 | General hospital | 5 | General paediatric hospital | 88 | Other | 99 | Unknown |
| |
15 | Shared care arrangement indicator | Number
[1]
| | |
16 | Treatment funding source | Number
[1]
| 1 | Public | 2 | Private | 3 | Compensable | 4 | Private and compensable | 8 | Unknown |
| DSS specific information: Record this data element for the initial course of treatment for cancer. |
17 | Multidisciplinary team review indicator | Number
[1]
| | DSS specific information: A multidisciplinary team is a team of medical professionals and/or allied health professionals who are working to provide multidisciplinary care to a patient. The specific disciplines represented in a multidisciplinary team will vary based on the disease type. In relation to cancer treatment, the disciplines represented in a core multidisciplinary team should minimally include surgery, oncology (radiation and medical oncology), pathology, radiology and supportive care, and may be expanded or contracted to include services, such as genetics, psychiatry, physiotherapy and nuclear medicine. |
18 | Specialist support services indicator | Number
[1]
| | |
19 | Specialist support services type | Number
[2]
| 1 | Educational support | 2 | Community service | 3 | Psychiatrist | 4 | Psychologist | 5 | Specialist nurse/nurse counsellor | 6 | Professional or volunteer support group | 7 | Individual peer support | 8 | Counsellor/bereavement counsellor | 9 | Pastoral care | 88 | Other | 97 | Not applicable-no specialist support services received | 98 | Unknown whether specialist support services were received | 99 | Support services received but type not stated/inadequately described |
| Conditional obligation: Complete if Cancer treatment— specialist support services indicator, yes/no/unknown code N equals 'yes'. |
20 | Specialist support services description | String
[100]
| X[X(99)]
A combination of alphanumeric characters. | Conditional obligation: Complete if Cancer treatment— specialist support services indicator, yes/no/unknown code N equals 'yes' and Cancer treatment— specialist support services type, code N[N] equals 'other'. |
21 | Care coordinator assignment indicator | Number
[1]
| | |
22 | Variation from planned treatment indicator | Number
[1]
| | Conditional obligation: This is to be collected for the intial course of treatment. DSS specific information: Record this data element for the initial course of treatment for cancer. |
23 | Treatment plan modification description | String
[150]
| X[X(149)] A combination of alphanumeric characters. | Conditional obligation: Complete if Cancer treatment—variation from planned treatment indicator, yes/no/unknown code N equals 'yes'. |
24 | Fertility counselling offered indicator | Number
[1]
| | |
25 | Fertility counselling provided indicator | Number
[1]
| | Conditional obligation: Complete if Person with cancer—fertility counselling offered indicator, yes/no/unknown code N equals 'yes'. |
26 | Fertility preservation procedure indicator | Number
[1]
| | |
27 | Fertility preservation procedure type | Number
[2]
| 1 | Preservation of embryo | 2 | Preservation of sperm | 3 | Preservation of oocyte | 4 | Ovarian tissue cryopreservation | 5 | Ovarian transposition | 6 | Hormonal ovarian suppression | 7 | Gonadotropin releasing hormone (GnRH) analogue | 88 | Other | 99 | Fertility preservation procedure used but type not specified/inadequately described |
| Conditional obligation: Complete if Person with cancer—fertility preservation procedure indicator, yes/no/unknown code N equals 'yes'. |
28 | Fertility preservation procedure type description | String
[100]
| X[X(99)]
A combination of alphanumeric characters. | Conditional obligation: Complete if Person with cancer—fertility preservation procedure indicator, yes/no/unknown code N equals 'yes' and Person with cancer—fertility preservation procedure type, code N[N] equals 'other'. |
29 | Fertility preservation utilised indicator | Number
[1]
| | Conditional obligation: Complete if Person with cancer—fertility preservation procedure indicator, yes/no/unknown code N equals 'yes'. |
30 | Pregnancy outcome indicator | Number
[1]
| | |
31 | ECOG score | Number
[1]
| 0 | Fully active, able to carry on all pre-disease performance without restriction. | 1 | Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work. | 2 | Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours. | 3 | Capable of only limited selfcare, confined to bed or chair more than 50% of working hours. | 4 | Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair. | 8 | Unknown | 9 | Not stated |
| |
32 | Date of cancer staging | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | |
33 | Distant metastatic site(s) at diagnosis (ICD-O-3 code) | String
[5]
| ANN.N
The ICD-O (3rd edition) topography code set representing the site of the tumour. | |
34 | Colinet comorbidities | Number
[2]
| 1 | Cardiovascular | 2 | Respiratory | 3 | Neoplastic | 4 | Renal insufficiency | 5 | Diabetes | 6 | Alcoholism | 7 | Tobacco consumption | 97 | Not applicable-no comorbidities present | 98 | Unknown whether comorbidities are present | 99 | Comorbidities are present but type not stated/inadequately described |
| |
35 | Cancer comorbidities description | String
[100]
| X[X(99)]
A combination of alphanumeric characters. | Conditional obligation: Complete when Person with cancer—comorbidities, Colinet defined comorbidities code N[N] equals 'other'. |
36 | Research trial type | Number
[1]
| 1 | Clinical trial | 2 | Supportive care trial | 3 | Other research | 7 | Not applicable - Not enrolled in any research trial/study | 8 | Unknown - Research enrolment unknown | 9 | Not stated/inadequately described - Enrolled in research, but type not stated/ inadequately described |
| DSS specific information: This item should be recorded for clinical trials relating to the initial course of treatment and clinical trials relating to the first recurrence of cancer where applicable. |
37 | Clinical trial name and number | String
[400]
| X[X(399)] A combination of alphanumeric characters. | Conditional obligation: Complete when Person with cancer—research trial type, code N equals 'clinical trial'. DSS specific information: This item should be recorded for clinical trials relating to the initial course of treatment and clinical trials relating to the first recurrence of cancer where applicable. |
38 | Clinical trial phase | Number
[1]
| 1 | Phase I | 2 | Phase II | 3 | Phase III | 4 | Phase IV | 9 | Unknown |
| Conditional obligation: Complete when Person with cancer—research trial type, code N equals 'clinical trial'. DSS specific information: This item should be recorded for clinical trials relating to the initial course of treatment and clinical trials relating to the first recurrence of cancer where applicable. |
39 | Clinical trial funding basis | Number
[1]
| 1 | Academic | 2 | Industry | 3 | Both academic and industry | 7 | Not applicable, no clinical trial entered | 8 | Unknown | 9 | Clinical trial entered but funding not stated/inadequately described |
| Conditional obligation: Complete when Person with cancer—research trial type, code N equals 'clinical trial'. DSS specific information: This item should be recorded for applicable trials relating to the initial course of treatment or the first recurrence of cancer. |
40 | Supportive care trial name | String
[40]
| X[X(39)] A combination of alphanumeric characters. | Conditional obligation: Complete when Person with cancer—research trial type, code N equals 'supportive care trial'. DSS specific information: This item should be recorded for applicable trials relating to the initial course of treatment or the first recurrence of cancer. |
41 | Research enrolment name | String
[40]
| X[X(39)] A combination of alphanumeric characters. | Conditional obligation: Complete when Person with cancer—research trial type, code N equals 'other research'. DSS specific information: This item should be recorded for research studies that relate to the initial course or first recurrence of cancer. |
42 | Intention of treatment | Number
[1]
| 1 | Prophylactic | 2 | Curative | 3 | Palliative | 9 | Not stated/inadequately described |
| |
43 | Referral to palliative care services indicator | Number
[1]
| | |
44 | Date of referral to palliative care services | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | Conditional obligation: Complete if Person with cancer—referral to palliative care services indicator, yes/no/unknown code N equals 'yes'. |
45 | External beam radiotherapy type | Number
[2]
| 1 | 2 dimensional (2D) | 2 | 2.5 dimensional (2.5D) | 3 | 3 dimensional conformal radiation therapy (3DCRT) | 4 | Intensity-modulated radiation therapy (IMRT) | 5 | Image-guided radiation therapy (IGRT) | 97 | Not applicable-radiotherapy was not administered | 98 | Unknown whether radiotherapy was administered | 99 | Radiotherapy was administered but planning technique not stated/inadequately described |
| Conditional obligation: Collect this data element if Cancer treatment—radiotherapy treatment type, code N[N] indicates the use of external beam radiotherapy. |
46 | Brachytherapy dose rate | Number
[1]
| 1 | Low dose rate (LDR) | 2 | Medium dose rate (MDR) | 3 | High dose rate (HDR) | 4 | Pulsed dose rate (PDR) | 7 | Not applicable, no brachytherapy administered | 8 | Unknown whether brachytherapy administered | 9 | Brachytherapy administered but dose not available/inadequately specified |
| Conditional obligation: Complete this item if Cancer treatment—radiotherapy treatment type, code N[N] indicates the use of brachytherapy. DSS specific information: This is to be collected for the intial course of treatment. |
47 | Date of treatment outcome | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | DSS specific information: Collect this item for outcome of treatment relating to the initial cancer primary and the outcome of treatment relating to the first recurrence of cancer. |
48 | Immediate/short-term treatment complication indicator | Number
[1]
| 1 | Yes | 2 | No | 7 | Not applicable | 8 | Unknown | 9 | Not stated/inadequately described |
| Conditional obligation: Record this data element in relation to any immediate or short-term treatment complications that were experienced by the patient during medical treatment. This includes adverse events taking place within 30 days of treatment. |
49 | Treatment complication date | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | Conditional obligation: Complete if Patient—treatment complication indicator, yes/no/not applicable/unknown/not stated/inadequately described code N equals 'yes'. DSS specific information: Record this data element for any immediate or short-term treatment complications that were experienced by the patient during medical treatment. This includes any adverse events taking place within 30 days of treatment. |
50 | Treatment complication outcome | Number
[1]
| 1 | Adverse events/toxicities that limited the treatment dose | 2 | Adverse events/toxicities that delayed treatment | 3 | Adverse events/toxicities that adversely affected performance status post treatment | 8 | Unknown | 9 | Adverse events/toxicities but they are inadequately described |
| Conditional obligation: Complete if Patient—treatment complication indicator, yes/no/not applicable/unknown/not stated/inadequately described code N equals 'yes'. DSS specific information: Record this data element for any immediate or short-term treatment complications that were experienced by the patient during medical treatment. This includes any adverse events taking place within 30 days of treatment. |
51 | Treatment complication description | String
[150]
| X[X(149)] A combination of alphanumeric characters. | Conditional obligation: Complete if Patient—treatment complication indicator, yes/no/not applicable/unknown/not stated/inadequately described code N equals 'yes'. |
52 | Adverse event indicator | Boolean
[1]
| | |
53 | Date of adverse event | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | Conditional obligation: Collect this item if Patient—adverse event indicator, yes/no code N equals 'yes'. |
54 | Adverse event grade | Number
[1]
| 1 | Grade 1 | 2 | Grade 2 | 3 | Grade 3 | 4 | Grade 4 | 5 | Grade 5 | 7 | Not applicable, no adverse events | 8 | Unknown | 9 | Adverse event, but grade inadequately specified |
| Conditional obligation: Complete if Patient—adverse event indicator, yes/no code N equals 'yes'. |
55 | Cancer treatment type | Number
[2]
| 1 | Surgery only | 2 | Radiotherapy only | 3 | Systemic agent therapy only | 4 | Surgery and radiotherapy | 5 | Surgery and systemic agent therapy | 6 | Radiotherapy and systemic agent therapy | 7 | Surgery, radiotherapy and systemic agent therapy | 97 | Not applicable—treatment was not administered | 98 | Unknown whether treatment was administered | 99 | Treatment was administered but the type was not stated/inadequately described |
| Conditional obligation: Complete when there is a first recurrence of cancer. DSS specific information: Complete this in relation to treatment for a first recurrence of cancer. |
56 | Other cancer treatment description | String
[150]
| X[X(149)] The cancer-directed treatment administered to the patient that cannot be defined as surgery, radiotherapy or systemic therapy. | Conditional obligation: Complete when there is a first recurrence of cancer. DSS specific information: Complete this in relation to treatment for a first recurrence of cancer. |
57 | Late effect indicator | Number
[1]
| 1 | Yes | 2 | No | 8 | Unknown | 9 | Not stated/inadequately described |
| |
58 | Date of late effect | Date/Time
[8]
| DDMMYYYY The day of a particular month and year. | Conditional obligation: Complete when Person with cancer—late effects indicator, yes/no/unknown/not stated/inadequately described code N equals 'yes'. |
59 | Late effect type text | String
[400]
| X[X(399)] A combination of alphanumeric characters. | Conditional obligation: Complete when Person with cancer—late effects indicator, yes/no/unknown/not stated/inadequately described code N equals 'yes'. |
60 | Distress status in past week | Number
[2]
| N[N] A code set representing the values on the distress thermometer. | DSS specific information: It is recommended that this item is collected within 2 weeks of diagnosis, 6-8 weeks post diagnosis, and 6 months post diagnosis. Any further screening should take place at the clinician’s discretion or the patient’s request. At a minimum, this should occur at remission, recurrence, or progression. For more information regarding the use of the distress thermometer with Adolescent and Young Adults with cancer, please consult the Psychosocial Management of AYAs diagnosed with cancer: Guidance for health professionals (http://wiki.cancer.org.au/australia/
COSA:Psychosocial_management_of_AYA_cancer_patients/
Information_and_resources). |