Adolescents and Young Adults

Cancer in Adolescents and Young Adults

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.

Clinical trials are a research experiment or observation to test new therapeutic options against current standard treatments. Improvements in cancer treatments over time have led to improved survival outcomes in the general population. Unfortunately, increases in survival have been slower for AYA when compared to other age groups which has been attributed to low rates of AYA clinical trial participation.

Overcoming the barriers to AYA clinical trial participation in Victoria

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.

The VCCC Alliance 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

Low AYA clinical trial participation is of national and international concern, and although Victorian-based, these barriers and solutions may be relevant more broadly. The information and resources in this toolkit are made available to clinicians, researchers, clinical trial units and hospital administrators seeking to address similar barriers in their own healthcare settings.