Lung cancer (clinical) DSS

Identifying and definitional attributes
Metadata item type:	Data Set Specification
METEOR identifier:	430950
Registration status:	Health, Superseded 14/05/2015
DSS type:	Data Set Specification (DSS)
Scope:	The purpose of the Lung cancer (clinical) data set specification (LCCDSS) is to define data standards for the national collection of lung cancer clinical data so that data collected is consistent and reliable. Collection of this data set specification is not mandated but it 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 Lung cancer (clinical) data set specification 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 Lung cancer (clinical) data set specification will support prospective data collection from the time a 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 this data set specification 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 and patterns of care can be monitored to understand both the appropriateness and effectiveness 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 the 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.

Collection and usage attributes

Guide for use:

The data elements in the Lung cancer (clinical) data set specification with obligations described as mandatory or conditional for collection are recommended as best practice, while the data items described as optional are for collection at the discretion of the treating centre and may be contingent, for example, on the availability of resources.

Collection methods:

This data set specification 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 Lung cancer (clinical) data set specification should be considered. The data set specification can also be used by a wider range of health and health-related establishments that create, use, or maintain records on health-care clients.

Comments:

Glossary items

Glossary terms that are relevant to this data set specification are included here.

Immunohistochemistry

Immunotherapy

Medical imaging

Molecular pathology

Palliative care

Psychosocial services

Radiotherapy

Record linkage

Second-line treatment

Systemic therapy procedure

Source and reference attributes

Submitting organisation:

Cancer Australia

Relational attributes

Related metadata references:

Metadata items in this Data Set Specification

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Seq No.	Metadata item	Obligation	Max occurs
1	Cancer treatment—distance of closest surgical margin, total millimetres N[N] *Conditional obligation:* Collect when a person with cancer has undergone surgery during their initial course of cancer treatment for the purpose of removing cancer (either invasive or in situ).	Conditional	1
2	Cancer treatment—lung cancer surgical margin qualifier, code N[N] *Conditional obligation:* Collect when a person with cancer has undergone surgery during their initial course of cancer treatment for the purpose of removing lung cancer (either invasive or in situ).	Conditional	1
3	Cancer treatment—multidisciplinary team review indicator, yes/no/unknown code N *DSS specific information:* This item is to be collected in relation to the initial course of treatment for cancer.	Mandatory	1
4	Cancer treatment—radiotherapy target site for lung cancer, code N *Conditional obligation:* Collect when a person with cancer has undergone radiotherapy as part of their initial course of cancer treatment.	Conditional	1
5	Cancer treatment—residual (R) tumour indicator, yes/no code N *Conditional obligation:* Collect when a person with cancer has completed their initial course of cancer treatment.	Conditional	1
6	Cancer treatment—residual (R) tumour type, code AX *Conditional obligation:* Collect when a person with cancer has completed their initial course of cancer treatment.	Conditional	1
7	Health service event—first service contact date, DDMMYYYY *DSS specific information:* Use this data element to record the date a patient presents for the first time to a lung or cancer specialist. This consultation may occur prior to diagnosis so the specialist is involved in the diagnostic process or after the diagnosis of lung cancer has been made so the specialist is involved in the treatment of cancer. A lung or cancer specialist is defined as a consultant in any of the following specialties: respiratory medicine, cardio-thoracic surgery, clinical oncology, medical oncology and radiation oncology.	Conditional	1
8	Patient—intention of treatment, code N *DSS specific information:* This item should be collected in relation to the initial course of treatment for cancer.	Mandatory	1
9	Person (address)—country identifier, code (SACC 2011) NNNN	Mandatory	1
10	Person with cancer—basis of diagnostic investigation, code N	Mandatory	1
11	Person with cancer—clinical trial entry status, code N	Optional	1
12	Person with cancer—clinical trial identifier, text X[X(399)] *Conditional obligation:* Conditional on a person with cancer being accepted into a clinical trial.	Conditional	99
13	Person with cancer—comorbidities, Colinet defined comorbidities code N[N]	Mandatory	7
14	Person with cancer—date clinical trial entered, DDMMYYYY	Optional	1
15	Person with cancer—date of referral to palliative care services, DDMMYYYY *Conditional obligation:* Conditional on patient referral to palliative care services.	Conditional	1
16	Person with cancer—date of referral to psychosocial services, DDMMYYYY *Conditional obligation:* Conditional on patient referral to psychosocial services.	Conditional	1
17	Person with cancer—distant metastatic site(s) at diagnosis, topography code (ICD-O-3) ANN.N *Conditional obligation:* Conditional on the identification of distant metastasis at the time of diagnosis of cancer.	Conditional	99
18	Person with cancer—immunohistochemistry type, text X[X(49)] *Conditional obligation:* Conditional on immunohistochemistry type being coded as Other (88).	Conditional	99
19	Person with cancer—lung cancer immunohistochemistry type, code N[N] *Conditional obligation:* Conditional on immunohistochemistry testing being completed.	Conditional	9
20	Person with cancer—lung cancer molecular pathology test results, code N[N] *Conditional obligation:* Conditional on molecular profiling being performed for cancer.	Conditional	14
21	Person with cancer—lymphovascular invasion indicator, yes/no code N	Mandatory	1
22	Person with cancer—lymphovascular invasion type, code N *Conditional obligation:* Conditional on lymphovascular invasion having occurred.	Conditional	3
23	Person with cancer—molecular pathology indicator, yes/no/unknown code N	Mandatory	1
24	Person with cancer—molecular pathology test date, DDMMYYYY *Conditional obligation:* Conditional on molecular profiling being performed for cancer.	Conditional	99
25	Person with cancer—molecular pathology test results, (other) code X[X(19)] *Conditional obligation:* Conditional on molecular pathology test results being coded as CODE 88 Other.	Conditional	99
26	Person with cancer—multiple primary tumours descriptor, code N *Conditional obligation:* This data element is to be recorded if Person with cancer—multiple primary tumours indicator, yes/no code N indicates the presence of multiple primary tumours.	Conditional	1
27	Person with cancer—multiple primary tumours indicator, yes/no code N	Mandatory	1
28	Person with cancer—performance status score at diagnosis, Eastern Cooperative Oncology Group code N	Mandatory	1
29	Person with cancer—perineural invasion indicator, yes/no/not applicable/not stated/inadequately described code N	Optional	1
30	Person with cancer—psychosocial services type, code N[N]	Optional	1
31	Person with cancer—reason(s) second-line treatment administered, code N *Conditional obligation:* Conditional on the administration of second-line treatment for cancer.	Conditional	4
32	Person with cancer—reason(s) treatment not administered, code N	Optional	6
33	Person with cancer—referral to palliative care services indicator, yes/no/unknown code N	Optional	1
34	Person with cancer—referral to psychosocial services indicator, yes/no/unknown code N	Mandatory	1
35	Person with cancer—second-line treatment intention, code N *Conditional obligation:* Conditional on the administration of second-line treatment for cancer.	Conditional	1
36	Person with cancer—second-line treatment type, code N[N] *Conditional obligation:* Conditional on the administration of second-line treatment for cancer.	Conditional	5
37	Person—asbestos exposure indicator, yes/no/unknown code N	Optional	1
38	Person—asbestos exposure setting, code N *Conditional obligation:* Conditional on the person having known exposure to asbestos.	Conditional	1
39	Person—diagnostic imaging type, lung cancer code N[N]	Optional	16
40	Person—Individual Healthcare Identifier, N(16)	Mandatory	1
41	Person—lung cancer diagnostic procedure type, code N[N]	Optional	20
42	Person—number of cigarettes smoked (per day), total N[N] *Conditional obligation:* Conditional on the person currently smoking tobacco daily or at least weekly, or smoking daily in the past.	Conditional	1
43	Person—tobacco product smoked, code N *Conditional obligation:* Conditional on the patient currently smoking tobacco daily or smoking daily in the past.	Conditional	1
44	Person—tobacco smoking duration (daily smoking), total years N[N] *Conditional obligation:* Conditional on the patient currently smoking tobacco daily or smoking daily in the past.	Conditional	1
45	Person—tobacco smoking quit age (daily smoking), total years NN *Conditional obligation:* Conditional on the patient not currently smoking but being a daily tobacco smoker in the past.	Conditional	1
46	Person—tobacco smoking start age (daily smoking), total years NN *Conditional obligation:* Conditional on the patient currently smoking tobacco daily or smoking daily in the past.	Conditional	1
47	Person—tobacco smoking status, code N	Mandatory	1
48	Person—unintentional weight loss indicator, yes/no/unknown code N *DSS specific information:* This item should be recorded at diagnosis when recorded in the context of this Data Set Specification.	Mandatory	1
49	Cancer (clinical) DSS *DSS specific information:* The Cancer (clinical) data set specification is intended to only describe data collected in relation to the initial course of cancer treatment. The initial course of treatment includes all treatments administered to the patient from diagnosis and before disease progression or recurrence.	Mandatory	1

Lung cancer (clinical) DSS

Identifying and definitional attributes

Collection and usage attributes

Source and reference attributes

Relational attributes

Metadata items in this Data Set Specification

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