Improving Outcomes and Services for Adolescents and Young Adults (AYA) with Cancer
Adolescents and young adults (AYAs) with cancer have distinctly different clinical, psychosocial, social and information needs to children and adults with cancer. AYAs have the lowest improvement in survival over the past 20-30 years of any age group.
Over the past two years COSA has been working with CanTeen and Cancer Australia in a national collaborative effort to improve outcomes for AYAs with cancer. COSA has convened workshops to explore issues and challenges and develop strategies to improve the management and care of AYA cancer patients.
In December 2008 COSA established a national AYA Cancer Steering Committee, chaired by Associate Professor David Thomas, to guide and help coordinate this activity.
In 2008 the Australian Government committed $15 million funding for the Youth Cancer Networks Program (YCNP) to develop services for adolescents and young adults with cancer. Funding is allocated for five jurisdictional projects and for national projects and evaluation.
COSA has been contracted to deliver three separate but related YCNP projects to:
• develop a national network of AYA health professionals
• support AYA cancer clinical research and increase AYA participation in clinical trials
• develop guidelines and protocols for the best treatment and support of AYAs with cancer (with the Cancer Institute NSW).
Youth Cancer Networks Program
The Youth Cancer Networks Program is funded by the Australian Government and administered by CanTeen. The objective of the program is to deliver better models of care for adolescents and young adults (aged 15-24 years) diagnosed with cancer.
The projects that are being funded will:
• assist in the establishment of youth cancer networks nationally
• improve services for adolescents and young adults with cancer
• improve the coordination of services for adolescents and young adults with cancer
• improve the support and care for adolescents and young adults with cancer.
In addition to funding jurisdictional projects, the program allocates funding for national projects to improve the health outcomes of adolescents and young adults with cancer.
National Workshops
COSA has convened three national meetings to bring together stakeholders and help coordinate efforts to improve treatment, support and access to clinical trials for adolescents and young adults with cancer to improve their survival rates and psychosocial outcomes.
AYA Cancer Forum (May 2007)
In May 2007 COSA, in collaboration with the Australian and New Zealand Children’s Haematology/Oncology Group (ANZCHOG) and CanTeen, and with support from Cancer Council Australia and Cancer Australia, convened a forum to explore issues and challenges in the treatment and care of adolescents and young adults with cancer. This forum identified key principles for the effective treatment and care of AYA cancer patients. The principles were provided to Cancer Australia’s AYA Cancers Reference Group to develop a framework for AYA cancer services in Australia. The Reference Group completed a final draft of a National Service Delivery Framework for Adolescents and Young Adults with Cancer in late 2008.
Report of the 2007 AYA Cancer Forum (pdf,144kb)
AYA Cancer Workshop (November 2008)
In November 2008 COSA convened a second workshop to bring together key stakeholders to exchange information about the availability of funding, state-based actions to develop AYA cancer services, and the value of national collaboration to develop guidelines and key functions to support implementation of AYA cancer services. To progress and support these activities COSA has formed a national AYA Cancer Steering Committee. As a first task the committee is leading an online process to develop guidelines and resources to support implementation of AYA cancer services. All members of the AYA Cancer Interest Group will be invited to contribute.
Report of the 2008 AYA Cancer Workshop (pdf, 80kb)
AYA Cancer Workshop (November 2009)
COSA convened a workshop in November 2009 to bring together the key stakeholders in the Youth Cancer Networks Program (YCNP):
• to be updated about the YCNP by CanTeen
• to learn more about other projects funded by the program and
• to identify opportunities for national collaboration and/or coordination to support the jurisdictional projects and enhance AYA cancer services across Australia.
As well as the YCNP jurisdictional and national project leaders, invited participants included members of COSA’s AYA Cancer Steering Committee and representatives of CanTeen, Cancer Australia, the Australian Government Department of Health and Ageing and relevant national cooperative clinical trials groups.
Report of the AYA Cancer Workshop 2009
AYA Cancer Interest Group
COSA’s Adolescent and Young Adult (AYA) Cancer Interest Group is a multidisciplinary group focused on the unique medical, psychosocial, social and information needs of adolescents and young adults with cancer and their families and partners.
We welcome membership and participation by all health professionals involved in the care and support of adolescents and young adults with cancer. COSA members have access to our web-based forum to contribute to discussion and activities and other resources.
Chair: Associate Professor David Thomas