Adolescent and young adult cancer (clinical) NBPDS
Data Set Specification Attributes
Identifying and definitional attributes
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The purpose of the Adolescent and young adult cancer (clinical) National best practice data set (AYANBPDS) 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 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 AYANBPDS is used in conjunction with the Cancer (clinical) National best practice dat set (CCNBPDS). 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 CCNBPDS 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 AYANBPDS 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 AYANBPDS 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: