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Adolescent and young adult cancer (clinical) DSS

Identifying and definitional attributes

Metadata item type:Help on this termData Set Specification
METeOR identifier:Help on this term432097
Registration status:Help on this termHealth, Superseded 14/05/2015
DSS type:Help on this termData Set Specification (DSS)
Scope:Help on this term

The purpose of the Adolescent and young adult cancer (clinical) data set specification (AYADSS) is to define data standards for the national collection of data for adolescents and young adults (commonly defined as a person between 15 and 29 years of age) with cancer so that data collected is consistent and reliable. It provides definitions and detailed instructions for coding cancer clinical information for adolescent and young adults with cancer and contains generic data elements for adolescent and young adults with cancer, most of which would be relevant to each patient regardless of organ site of cancer or histology type.

Collection of this data set specification is not mandated but is recommended as best practice if clinical cancer data are to be collected. It will facilitate more consistent data collection while enabling individual treatment centres or health service areas to develop data extraction and collection processes and policies that are appropriate for their service settings.

The AYADSS is used in conjunction with the Cancer (clinical) data set specification (CCDSS). Mandatory reporting regulations have enabled population-based cancer registries in Australia to collect standard information on all incident cases of cancer (apart from non-melanoma skin cancers), from which incidence, mortality and overall survival have been determined and trends monitored. The CCDSS provides a framework for the collection of more detailed and comprehensive clinical data such as stage of cancer at diagnosis, other prognostic characteristics, cancer treatment and patient outcomes.

The AYADSS will support prospective data collection from the time an AYA person with cancer symptoms is referred or first presents to a hospital or specialist through the entire duration of their illness.

The definitions used in the AYADSS are designed to capture the provision of cancer care on a day-to-day level. They relate to the cancer care pathway and the need to optimise care by correctly diagnosing, evaluating and managing patients with cancer. In addition, end-points, such as survival, and patterns of care can be monitored to understand both the effectiveness and appropriateness of cancer care.

The data elements specified provide a framework for:

  • promoting the delivery of evidence-based care to patients with cancer
  • facilitating the ongoing improvement in the quality and safety of cancer management in treatment settings
  • improving the epidemiological and public health understanding of cancer
  • informing treatment guidelines and professional education
  • guiding resource planning and the evaluation of cancer control activities

They will facilitate the aggregation of data across different treatment centres.

The underlying long-term goal is to provide data support to improve outcomes for patients by increasing their quality and length of life. For example, a comparison of the actual management of patients with best practice guidelines may identify shortfalls in treatment and limitations in access to treatment modalities for some patients. 

The availability of nationally consistent data on cancer, stage of cancer at diagnosis, other prognostic features, treatment and patient outcomes is fundamental for monitoring appropriateness and quality of cancer services and for pooling data for research. For many years clinical databases have been developed locally, and while of local value, differences in content and data definitions have reduced their value for national applications.

Collection and usage attributes

Collection methods:Help on this term

The AYADSS is primarily directed at the clinical and clinical epidemiological use of cancer data. Treatment centres such as hospitals, radiotherapy centres and cancer specialist practices are the settings in which implementation of the adolescent and young adult cancer data set specification should be considered. The AYADSS can also be used by a wider range of health and health-related establishments that create, use, or maintain records on health-care clients.

Source and reference attributes

Submitting organisation:Help on this termCancer Australia

Relational attributes

Related metadata references:Help on this term

Has been superseded by Adolescent and young adult cancer (clinical) NBPDS Health, Standard 14/05/2015

Metadata items in this Data Set SpecificationHelp on this term

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Seq No.Help on this termMetadata itemHelp on this term ObligationHelp on this term Max occursHelp on this term
1Person—main language other than English spoken at home, code (ASCL 2011) NN{NN}Mandatory1
2Person with cancer—setting of death, code N[N]Conditional1
3Person—first degree relative cancer history indicator, yes/no/not applicable/unknown/not stated/inadequately described code NMandatory9
4Person—second degree relative cancer history indicator, yes/no/not applicable/unknown/not stated/inadequately described code NMandatory19
5Person with cancer—family history of hereditary genetic events indicator, yes/no/unknown/not stated/inadequately described code NMandatory9
6Person with cancer—hereditary genetic events type, code N[N]Conditional9
7Person with cancer—hereditary genetic events type, text X[X(39)]Conditional9
8Person with cancer—personal genetic syndrome indicator, yes/no/unknown/not stated/inadequately described code NOptional1
9Person with cancer—personal genetic syndrome type, genetic event type code N[N]Conditional9
10Person with cancer—personal genetic syndrome type, text X[X(39)]Conditional9
11Person with cancer—date of cancer symptom onset, DDMMYYYYMandatory1
12Person with cancer—date of initial primary health care consultation, DDMMYYYYMandatory1
13Person with cancer—date of initial medical specialist consultation, DDMMYYYYMandatory1
14Person with cancer—adolescent and young adult cancer healthcare provider type, code N[N]Mandatory1
15Person with cancer—shared care arrangement indicator, yes/no/unknown code NMandatory1
16Cancer treatment—treatment funding source, code NMandatory1
17Cancer treatment—multidisciplinary team review indicator, yes/no/unknown code NMandatory1
18Cancer treatment—specialist support services indicator, yes/no/unknown code NMandatory1
19Cancer treatment—specialist support services type, code N[N]Conditional19
20Cancer treatment—specialist support services type, text X[X(99)]Conditional19
21Person with cancer—care coordinator assignment indicator, yes/no/pending code NMandatory1
22Cancer treatment—variation from planned treatment indicator, yes/no/unknown code NConditional1
23Cancer treatment—treatment plan modification, text X[X(149)]Conditional9
24Person with cancer—fertility counselling offered indicator, yes/no/unknown code NMandatory1
25Person with cancer—fertility counselling provided indicator, yes/no/unknown code NConditional1
26Person with cancer—fertility preservation procedure indicator, yes/no/unknown code NMandatory1
27Person with cancer—fertility preservation procedure type, code N[N]Conditional9
28Person with cancer—fertility preservation procedure type, text X[X(99)]Conditional9
29Person with cancer—fertility preservation utilised indicator, yes/no/not applicable code NConditional1
30Person with prior cancer diagnosis—pregnancy outcome indicator, yes/no code NMandatory1
31Person with cancer—performance status score at diagnosis, Eastern Cooperative Oncology Group code NMandatory1
32Cancer staging—date of cancer staging, DDMMYYYYOptional19
33Person with cancer—distant metastatic site(s) at diagnosis, topography code (ICD-O-3) ANN.NMandatory19
34Person with cancer—comorbidities, Colinet defined comorbidities code N[N]Conditional9
35Person with cancer—comorbidities, text X[X(99)]Conditional9
36Person with cancer—research trial type, code NMandatory19
37Person with cancer—clinical trial identifier, text X[X(399)]Conditional9
38Person with cancer—clinical trial phase, code NConditional9
39Person with cancer—clinical trial funding basis, code NConditional9
40Person with cancer—supportive care trial name, text X[X(39)]Conditional9
41Person with cancer—research enrolment name, text X[X(39)]Conditional9
42Patient—intention of treatment, code NMandatory1
43Person with cancer—referral to palliative care services indicator, yes/no/unknown code NMandatory1
44Person with cancer—date of referral to palliative care services, DDMMYYYYConditional1
45Cancer treatment—external beam radiotherapy type, code N[N]Conditional5
46Cancer treatment—brachytherapy dose rate, code NConditional9
47Cancer treatment—date of treatment outcome, DDMMYYYYMandatory1
48Patient—immediate/short term treatment complication indicator, yes/no/not applicable/unknown/not stated/inadequately described code NOptional1
49Patient—treatment complication date, DDMMYYYYConditional19
50Cancer treatment—treatment complication outcome, code NConditional19
51Cancer treatment—treatment complication type, text X[X(149)]Conditional19
52Patient—adverse event indicator, yes/no code NMandatory1
53Patient—date of adverse event, DDMMYYYYConditional19
54Health service event—adverse event grade, code NConditional19
55Cancer treatment—cancer treatment type, code N[N]Conditional5
56Cancer treatment—other cancer treatment, text X[X(149)]Conditional9
57Person with cancer—late effect indicator, yes/no/unknown/not stated/inadequately described code NMandatory1
58Person with cancer—date of late effect, DDMMYYYYConditional19
59Person with cancer—late effect type, text X[X(399)]Conditional19
60Person—distress status in past week, distress thermometer code N[N]Optional99
999Cancer (clinical) DSSMandatory1
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