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Systems-Level Change to Alleviate Barriers to Cancer Clinical Trial Access for Adolescents and Young Adults in Australia
journal contributionposted on 2024-01-17, 02:44 authored by Justine A Ellis, Vajiranee S Malalasekera, Christie Allan, Peter F Choong, Jordan HansfordJordan Hansford, Ryan Hehir, Natasha Morello, Sally O'Callaghan, Lisa Orme, Nitya PhillipsonNitya Phillipson, Mark A Rosenthal, Susan SawyerSusan Sawyer, Robyn Strong, Leanne Super, Angela Watt, Chris Williams, Anne Woollett, Alexandra Robertson, Jeremy Lewin
Purpose: International data demonstrate association between clinical trial participation and reduced cancer mortality. Adolescents and young adults (AYA) have low clinical trial enrollment rates. We established a program to understand local barriers and develop targeted solutions that lead to greater AYA clinical trial participation. Methods: A steering committee (SC) with expertise in adult and pediatric oncology, research ethics, and consumer representation was formed. The SC mapped barriers related to AYA trial access and established working groups (WGs) around three themes. Results: The Regulatory Awareness WG identified a lack of understanding of processes that support protocol approval for clinical trials across the AYA age range. A guideline to raise awareness was developed. The Access WG identified challenges for young adults (18-25 years) to access a pediatric hospital to enroll in a pediatric trial. A procedure was developed to streamline applications for access. The first six applications using this procedure have been successful. The Availability WG identified lack of pediatric-adult oncology reciprocal relationships as a barrier to awareness of open trials, and future collaboration. An AYA Craft Group Framework was established to grow relationships within tumor streams across institutions; two craft groups are now operating locally. An additional achievement was a successful request to the Therapeutic Goods Administration for Australian adoption of the Food and Drug Administration Guidance on Considerations for the Inclusion of Adolescent Patients in Adult Oncology Clinical Trials. Conclusion: This multipronged approach to improving AYA clinical trial access has relevance for other health environments. Our knowledge products are available as an online toolkit.
PublisherMary Ann Liebert
JournalJournal of Adolescent and Young Adult Oncology
Publisher licenceCC BY-NC
Online publication date2021-07-22
4203 Health Services and Systems32 Biomedical and Clinical Sciences42 Health SciencesRare DiseasesPediatricPediatric Research InitiativeClinical ResearchCancerPediatric CancerClinical Trials and Supportive Activities3 Good Health and Well BeingAdolescentAdultAustraliaClinical Trials as TopicHealth Services AccessibilityHospitals, PediatricHumansNeoplasmsYoung Adultaccessbarriersclinical trialssystem3211 Oncology and carcinogenesis4205 Nursing