Cultural Adaptation of Clinical Trials Education: Frankly Speaking About Cancer Clinical Trials Photo Novella and Fact Sheet

Background: Less than 8% of cancer clinical trial enrollees are Latino/Hispanic, although they comprise 17% of the US population.¹ Barriers to cancer clinical trials participation among Latinos/Hispanics include language and cultural differences, low health literacy, lack of information about clinical trials, and lack of opportunity for involving family in medical decisions.^2-4 Use of culturally sensitive approaches to enhance participation of ethnic minorities is important for advancing cancer care and eliminating health disparities.⁵ The Cancer Support Community (CSC) provides evidence-based educational materials that are written from the perspectives of patients and caregivers. With the impact of low clinical trials participation among Latinos/Hispanics in mind, CSC culturally adapted its clinical trials educational materials, Frankly Speaking About Cancer Clinical Trials photo novella⁶ and fact sheet, to make information about cancer clinical trials more accessible to Latinos/Hispanics affected by cancer.

Objective: Determine if Spanish speakers in the United States need additional educational pieces to address specific cultural barriers to clinical trial participation.

Methods: Focus groups were conducted in Spanish with a total of 33 adult participants (25 female) in Miami (n = 10), New York (n = 11) and Phoenix (n = 12). Participant places of origin included Central America, the Caribbean, and South America. Each group reviewed and discussed CSC’s educational materials about clinical trials, Frankly Speaking About Cancer Clinical Trials photo narrative and fact sheet.

Participants were asked to give feedback about ease of understanding, utility for decision-making about clinical trials participation, applicability to Latino/Hispanic culture, reactions to photos, and preferred time to receive the information. The discussions were transcribed; thematic content was categorized and coded, and frequencies of categories were tabulated.

Results

• Most participants (97%) reported that the photo novella was easy to understand and believed that the photographs supported the messages, with topics including what constitutes a clinical trial, when to consider a clinical trial, and safety guidelines for clinical trials, among others
• 90% reported that the images reflected themes that were relevant to Latino/Hispanic culture; 91% believed that the fact sheet explained clinical trials adequately and that the fact sheet and photo novella together were needed to fully understand clinical trials
• 70% wanted to receive these educational materials at diagnosis, while 9% believed it would be detrimental to receive it the day of diagnosis because it would be overwhelming
• 95% reported that the photo novella was an effective way to demystify participation in clinical trials, while the fact sheet provided crucial details needed when deciding whether to join a clinical trial

Conclusions: Findings suggest that CSC’s educational materials about cancer clinical trials in Spanish help address existing barriers to cancer clinical trials participation among Latino/Hispanic cancer patients and caregivers. These materials can lead to fruitful conversations among Latino/Hispanic cancer patients, family members, and clinicians about clinical trials as viable treatment options.

References

1. USA Today. Kaiser Health News. Latinos left out of clinical trials...and possible cures. www.usatoday.com/story/news/2017/07/24/kaiser-latinos-left-out-clinical-trials-and-possible-cures/103956714/. Published July 24, 2017. Accessed February 5, 2018.
2. National Hispanic Council on Aging (NHCOA). The Importance of Latinos in Clinical Trials. www.nhcoa.org/the-importance-of-latinos-in-clinical-trials. Accessed February 5, 2018.
3. Escobedo T. Beyond Sensitivity: Moving to Cultural Respect in Clinical Trials. University of California Irvine. http://gvahec.org/wp-content/uploads/2016/09/Tinas-Final-Cultural-Presentation_9_21_16.pdf. 2016. Accessed February 5, 2018.
4. Oh SS, Galanter J, Thakur N, et al. Diversity in clinical and biomedical research: a promise yet to be fulfilled. PLoS Med. 2015;12:e1001918.
5. Salman A, Nguyen C, Lee YH, et al. J Immigrant Minority Health. 2016;18:447. https://doi.org/10.1007/s10903-015-0198-9. Accessed February 5, 2018.
6. Cancer Support Community. Frankly Speaking About Cancer Clinical Trials. https://d2gyb6a32rq744.cloudfront.net/sites/default/files/fields/resource/file/2016-06/16-05500-photonovella-web-11inwide.pdf?v=1. Accessed February 5, 2018.