Solutions for removing barriers
Every year in Victoria, around 300 adolescents and young adults (AYA, 15-25 years) are diagnosed with cancer. Approximately 30 Victorian adolescents and young adults die from cancer each year. It is the leading cause of non-accidental death in this age group in Australia.
Some cancers occur more commonly in children and adolescents (paediatrics), and others more commonly in adults. Adolescents can also develop adult-type cancers, and young adults can develop paediatric-type cancers. For these patients, there is often a disconnect between their place of care and access to clinical trials.
Alleviating barriers to clinical trials access
The VCCC Increasing AYA Access to Clinical Trials Program identified the following four key barriers to AYA clinical trial participation, and developed solutions to alleviate these barriers:
1. Lack of understanding of the research ethics and governance requirements to establish a trial that is open to both paediatric and adult participants
Solution: AYA Research Ethics and Governance Guideline
2. Young adult patients are unable to access paediatric trials because they are too old to be admitted to a children’s hospital
Solution: Children’s hospital Young Adult Access Standard Operating Procedure and Application Form
3. Adolescents are unable to access adult trials because the lower age eligibility is set at 18 years
Solution: TGA adoption of the US FDA Guidance for the inclusion of adolescents in adult cancer trials for use in Australia
4. Lack of communication and collaboration between paediatric and adult oncology
Solution: A framework for greater Paediatric-Adult Oncology Collaboration
Accessibility solutions and resources
Information and resources have been developed with program working groups to increase opportunities for AYA patients. This toolkit is available to clinicians, researchers, clinical trial units and hospital administrators seeking to address similar challenges.
For more information on increasing clinical trial opportunities for adolescents and young adults, contact Associate Professor Justine Ellis, Associate Head Research Development Portfolio, e: firstname.lastname@example.org.