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.

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.