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Author Spotlight: Advancing Personalized Medicine in Ovarian Cancer
Published on: February 23, 2024
Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials:
Melissa P Beauchemin1, Desiree Walker2, Allison Rosen3
1Columbia University School of Nursing, New York, NY, United States.
Background:
Low rates of adolescent and young adult (YA; aged 15-39 y) 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 YAs.
Objective:
To understand and address unique barriers to CTE, we conducted focus groups to learn about informational, financial, and psychosocial needs of YAs surrounding CTE and identify strategies to address these barriers.
Methods:
We conducted 5 focus groups in 2023 among a diverse sample of YA patients from across the United States. An interview guide was developed collaboratively with YA 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 YA CTE and identified 9 subthemes: 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, YAs mentioned needs that might be addressed through informational outreach leveraging digital technology, the internet, and social media.
Conclusions:
This study expands knowledge of YA perceived barriers to CTE. These findings suggest that leveraging digital technology to disseminate reliable information to address needs may be an effective strategy to improve clinical trial participation in the YA population.
Insights
Adolescent and young adult (YA) cancer patients face barriers to clinical trial enrollment (CTE). Leveraging digital technology can improve access to information and address financial and psychosocial needs, boosting YA participation.
Area of Science:
- Oncology
- Clinical Trials
- Health Disparities
Background:
- Adolescent and young adult (YA) cancer patients (aged 15-39) have low clinical trial enrollment rates.
- This contributes to a lack of standardized treatments and suboptimal outcomes for YAs.
- Underserved YA populations are disproportionately affected by these low enrollment rates.
Purpose of the Study:
- To investigate the specific barriers preventing YAs from enrolling in cancer clinical trials.
- To understand the informational, financial, and psychosocial needs of YAs regarding clinical trial enrollment.
- To identify strategies, particularly technology-based ones, to overcome these barriers.
Main Methods:
- Conducted 5 focus groups with a diverse sample of YA cancer patients across the US in 2023.
- Developed interview guides collaboratively with YA advocates.
- Explored informational, financial, and psychosocial needs, and solicited strategy suggestions.
- Analyzed transcribed sessions using direct content analysis and synthesized findings via consensus.
Main Results:
- Confirmed existing barriers and identified 9 subthemes: awareness, information accessibility, fear, cost concerns, insurance, financial navigation, trial discussions, misconceptions, and support needs.
- YAs highlighted a need for information delivered via digital technology, the internet, and social media.
- Identified specific informational, financial, and psychosocial needs that hinder clinical trial enrollment.
Conclusions:
- This study enhances understanding of perceived barriers to clinical trial enrollment among YAs.
- Leveraging digital technology for information dissemination is a promising strategy to improve YA participation.
- Addressing informational, financial, and psychosocial needs is crucial for increasing clinical trial enrollment in this demographic.
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