JMIR Publications

ABSTRACT

Background:

Low rates of adolescent and young adult (AYA) clinical trial enrollment (CTE), particularly among underserved groups, have resulted in a lack of standardized cancer treatments and follow-up guidelines for this group that may limit improvement in cancer treatments and survival outcomes for AYAs.

Objective:

To understand and address unique barriers to CTE, we conducted focus groups to learn about informational, financial, and psychosocial needs of AYAs surrounding CTE and identify strategies to address these barriers.

Methods:

We conducted five focus groups in 2023 among a diverse sample of AYA patients from across the U.S. An interview guide was developed collaboratively with AYA advocates. Specifically, informational needs, financial concerns, and psychosocial issues were explored, and participants were probed to suggest strategies, especially those that leverage technology, to address these barriers. Sessions were audio recorded, transcribed, and coded using direct content analysis. Findings were synthesized through consensus discussions.

Results:

We confirmed the previously proposed thematic barriers regarding AYA CTE, and identified nine sub-themes: awareness, lack of clear and accessible CTE information, fear of the unknown, assumptions about costs, insurance coverage, navigating financial responsibilities, clinical trial discussions, clinical trial misconceptions, and desire for a support network. Throughout, AYAs mentioned needs that might be addressed through informational outreach leveraging technology, the internet, and social media.

Conclusions:

This study expands knowledge of AYA perceived barriers to CTE. These findings suggest that leveraging technology to disseminate reliable information to address needs may be an effective strategy to improve clinical trial participation in the AYA population. Clinical Trial: Not appliable.