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.
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.
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).
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).
Cancer treatment—multidisciplinary team review indicator, yes/no/unknown code N
Specific Information: This item is to be collected in relation to the initial course of treatment for cancer.
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.
Cancer treatment—residual (R) tumour type, code AX
Conditional Obligation:Collect when a person with cancer has completed their initial course of cancer treatment.
Health service event—first service contact date, DDMMYYYY
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.
Patient—intention of treatment, code N
Specific Information: This item should be collected in relation to the initial course of treatment for cancer.
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.
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.
Glossary terms that are relevant to this data set specification are included here.
Systemic therapy procedure