Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study
Abstract BackgroundLow 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...
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JMIR Publications
2025-01-01
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| Series: | JMIR Formative Research |
| Online Access: | https://formative.jmir.org/2025/1/e64265 |
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| author | Melissa P Beauchemin Desiree Walker Allison Rosen Maria Frazer Meital Eisenberger Rhea K Khurana Edward Bentlyewski Victoria Fedorko Corey H Basch Grace C Hillyer |
| author_facet | Melissa P Beauchemin Desiree Walker Allison Rosen Maria Frazer Meital Eisenberger Rhea K Khurana Edward Bentlyewski Victoria Fedorko Corey H Basch Grace C Hillyer |
| author_sort | Melissa P Beauchemin |
| collection | DOAJ |
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Abstract
BackgroundLow 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.
ObjectiveTo 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.
MethodsWe 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.
ResultsWe 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.
ConclusionsThis 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. |
| format | Article |
| id | doaj-art-6e6f387ff70e4b6297eee97fd4a4bb2a |
| institution | Kabale University |
| issn | 2561-326X |
| language | English |
| publishDate | 2025-01-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Formative Research |
| spelling | doaj-art-6e6f387ff70e4b6297eee97fd4a4bb2a2025-01-27T02:41:15ZengJMIR PublicationsJMIR Formative Research2561-326X2025-01-019e64265e6426510.2196/64265Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group StudyMelissa P Beaucheminhttp://orcid.org/0000-0003-4058-1586Desiree Walkerhttp://orcid.org/0009-0004-4275-7252Allison Rosenhttp://orcid.org/0000-0002-9429-4788Maria Frazerhttp://orcid.org/0009-0009-3051-8111Meital Eisenbergerhttp://orcid.org/0009-0001-3560-7764Rhea K Khuranahttp://orcid.org/0009-0008-5464-5548Edward Bentlyewskihttp://orcid.org/0009-0002-1940-2942Victoria Fedorkohttp://orcid.org/0009-0005-0563-4023Corey H Baschhttp://orcid.org/0000-0003-4862-4229Grace C Hillyerhttp://orcid.org/0000-0003-0467-075X Abstract BackgroundLow 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. ObjectiveTo 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. MethodsWe 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. ResultsWe 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. ConclusionsThis 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.https://formative.jmir.org/2025/1/e64265 |
| spellingShingle | Melissa P Beauchemin Desiree Walker Allison Rosen Maria Frazer Meital Eisenberger Rhea K Khurana Edward Bentlyewski Victoria Fedorko Corey H Basch Grace C Hillyer Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study JMIR Formative Research |
| title | Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study |
| title_full | Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study |
| title_fullStr | Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study |
| title_full_unstemmed | Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study |
| title_short | Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study |
| title_sort | insights from diverse perspectives on social media messages to inform young adults with cancer about clinical trials focus group study |
| url | https://formative.jmir.org/2025/1/e64265 |
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