Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing
Abstract
:1. Introduction
2. Materials and Methods
2.1. Development of the Spanish-Language Tool
2.2. Participant Recruitment and Data Collection
2.3. Pre- and Post-Tool Survey Measures
2.4. Qualitative Interviews
2.5. Quantitative Data Analysis
2.6. Qualitative Data Analysis
3. Results
3.1. Quantitative Survey Results
3.2. Qualitative Interview Results
4. Discussion
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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n (%) | |
---|---|
Gender | |
Female | 31 (75.6) |
Male | 10 (24.4) |
Age | |
18–29 | 3 (7.3) |
30–39 | 3 (7.3) |
40–49 | 11 (26.8) |
50–59 | 12 (29.3) |
60–69 | 9 (22.0) |
70–79 | 3 (7.3) |
Preferred language of medical information | |
Spanish | 31 (75.6) |
Both equally | 10 (24.4) |
Clinical cancer history | |
Never diagnosed | 22 (53.7) |
Previously diagnosed | 4 (9.8) |
Currently diagnosed | 15 (36.6) |
Has a family history of cancer | 38 (92.9) |
Genetic testing completed | 11 (26.8) |
Family completed genetic testing | |
Yes | 11 (26.8) |
No | 23 (56.1) |
Don’t know | 7 (17.1) |
Race/Ethnicity | |
Caribbean islander | 35 (85.4) |
South American | 1 (2.4) |
North America (U.S./Canada) | 2 (4.9) |
Central American | 1 (2.4) |
Other | 1 (2.4) |
Prefer not to answer | 1 (2.4) |
Problems learning about medical conditions | |
Never | 14 (34.1) |
Rarely | 13 (31.7) |
Sometimes | 13 (31.7) |
Most of the time | 1 (2.4) |
Educational level | |
High school not completed | 2 (4.9) |
High school completed | 13 (31.7) |
Some college | 1 (2.4) |
College graduate | 11 (26.8) |
Postgraduate degree | 14 (34.1) |
Subcategory | Quotes | |
---|---|---|
Aesthetics | Visual Quality | “I loved the design of the presentation in terms of the visuals from beginning to end. I found it friendly, as if flashy. From the first time I saw it, that was my immediate impression, that it was eye-catching” |
Audio Quality | “Well, the quality could be a little better. The volume sometimes varied depending on some slides where the volume was higher and others were lower and quality was half and half” | |
Narrator’s Voice | “It doesn’t bother me, it seems to me that she spoke clearly” | |
Content | Complexity or Unfamiliarity with Language | “If it’s the first time, it might be a little confusing or something, because the language wouldn’t be a normal thing for it, you know” |
“Obviously I also think that the person has to have a little, a little bit of knowledge of what genetics is because they’re going to see the term that maybe they’re not going to be very familiar with” | ||
Easy to Understand/Simple | “The presentation is extremely well written in terms of carrying in understandable language a lot of information that which is not so simple” | |
“It seems to me that the information is quite complete and I like that the language is simple, even though the information it is giving is quite detailed information as to what the causes are and how they work”. | ||
“Yes, of course. Its information is clear and simple to understand” | ||
Value of Information | “I think one of the things I remember that I stayed with was that even though I’m a man, I have and have children, including a girl—I think was helpful for me to take the test because it can make an impact. You can give me information for my daughter, even though I am a man”. | |
“This, which was good for me to be interested in that variant that obviously not right now has been studied, so it is not but, having seen the presentation helped me understand what the [VUS] meant…. I haven’t had the doctor’s appointment yet and have it next week but at least I could get an idea of what it was I was looking at when I saw the results. This I think… I think the presentation is extremely valuable”. | ||
Comprehension | Understanding of Hereditary Cancer | “Well, as I understood hereditary [cancer] is less possible. Only 10%, right? It is less possible to get it by inheritance”. |
“I could put it in simple words, there is genetic information that we can inherit and could or could not develop, but that we are at risk is that we have some predisposition to give that genetic information, yes. As I said, it is a Russian roulette, we can have the gene and not get [cancer]. We can have it, and then get [cancer]”. | ||
Risk Perspective | “Well, because of my family history, I have to be a little more careful than other people have, even though my results of the specific genes that were studied, that are being studied came out negative. This, my family history in that case is the one that predominates so my risk is a little higher than normal” | |
General Recommendations | Mode of Delivery | “I think always that flyers and pamphlets, that kind of thing that is something that really helps with medical issues” |
“Look, if there was like an interview, one person [talking] with another, or probably a testimony, like, look, I came out negative and my mom came out positive, it was positive and look, and we took the test, and it turned out that I came out. Huh, uh, uh, do you understand me? So that same one that you explained, but that a person says it, understand, I assure you that I will stay [paying attention] longer” | ||
Additional Information Needed | “If anything, dig a little deeper into the issue of insurance, because I think that’s an area…I don’t know. Maybe if I were the only one who had it but I think that digging a little more to give more security to the people who do contemplate having these exams in the future to give you more assurance that they are protected”. “If second part says mutations may be caused by errors during cell division or may be caused by exposure to agents in the environment that damage DNA… although I don’t know if you’re going to explain what those agents are later, but maybe they’ll explain it later”. | |
Access Barriers | “For example, …older people who are going to need a little [more] follow-up (in terms of understanding the concepts)”. “If someone like us sees it, [they will not] find barriers but for someone who cannot hear it, because it will be difficult to at least hear what the [narrator says] while reading I think not but that is taking into consideration that this community will access this type or this presentation” | |
Endorsement For General Public Use | “I found it very educational, and it seemed like something that should be shared with more people, not only the people who participate in this study, because there are many times that sometimes even in television programs and that makes jokes about it, but that many times people do not understand what it means even the most basic concepts, of negative or positive” “It’s a good idea that another person before going through this process saw this presentation. It is very informative”. |
Themes | Exemplar Quotes | Interpretive Conclusions |
---|---|---|
Testing benefits family members | “Those who come out with the positive result in the BRCA that we were talking about indicates that when the man, even if [they] don’t have it, that you take it from your mother or from someone, it can affect the little girl of mine that I have, who may have greater possibilities to get [cancer]”; “…the results help the family”. | Suggests understanding that even if they never developed cancer, their children could be at risk if they were to inherit a mutation in a cancer-predisposing gene. |
Importance of cancer family history | This type of sporadic cancer, hereditary, etc. the genetic testing of mutations that when it comes out positive, when the VUS variant comes out, when it is negative, but always taking into consideration the family history of cancer until the end. | Suggests understanding of the importance of family history in considering cancer screening, even without a positive genetic test result. |
Responses to positive genetic test results | “Destroyed. I would feel bad. I would feel like worried or very worried” | Demonstrates an emotional response of concern or worry about the results which is appropriate. |
“fight to have life and see how a proper recovery is possible”; | Suggests a potential lack of clarity in the meaning of a positive test result and viewing a positive genetic test result similar to being given a cancer diagnosis. | |
“Well, I think pretty prepared, right? This in the sense of knowing what the next step is and in addition to discussing it with the primary care physician, sharing it with family members or progeny. My children and the moment I have them let them know this is already genetically proven or you have to be aware”. | Demonstrates understanding of next steps based on positive results, including seeking prevention, speaking with doctors, and sharing the information with family members. | |
Responses to negative genetic test results | “Confused with you because if I receive a negative and I am positive for breast cancer. Well, I do not know, on the one hand it can be. If I take this out, the negative genetic test and I have cancer, or if it comes out positive for cancer like would my daughters have this. I mean, like how?” | Suggests a lack of understanding regarding the meaning of a genetic test result. |
“Fantastic, great, awesome. I would be happy. I would feel more confident but that would not take away my desire to check myself every now and then”. | Demonstrates understanding that negative results do not completely eliminate all cancer risks, and that prevention methods and check-ups would still be sought out. | |
Responses to VUS genetic test results | “If it’s like what I’ve understood from the video, it’s that a random mutation occurred, so it’s not hereditary. It’s not something we inherited from mom or dad, but it was just a mutation that happened randomly in the body and then that genetic change was found in the test, but you can’t see, you don’t determine that it comes from dad or that it comes from mom”. | Suggests trying to differentiate result from a positive result, yet misunderstanding that a VUS may or may not be inherited. |
“Well either way there is uncertainty because this like you have to get carried away by the family history of cancer as well. No, it’s not that you’re already excluded or that you’re 100% exonerated”. | Demonstrates understanding that increased risks of cancer may exist based on family history; thus, seeking clinical advice and screenings are still important | |
“I know I would feel the same way as if I had tested negative” | Demonstrates reaction to VUS and negative results would be similar which is appropriate given that most VUS results are ultimately reclassified as negative. |
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Share and Cite
Cragun, D.; Manso, G.; Arcusa, S.A.; Zuniga, B.; Dutil, J.; Cruz, M.; Pal, T. Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing. Curr. Oncol. 2023, 30, 8352-8362. https://doi.org/10.3390/curroncol30090606
Cragun D, Manso G, Arcusa SA, Zuniga B, Dutil J, Cruz M, Pal T. Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing. Current Oncology. 2023; 30(9):8352-8362. https://doi.org/10.3390/curroncol30090606
Chicago/Turabian StyleCragun, Deborah, Gretter Manso, Stefania Alastre Arcusa, Brenda Zuniga, Julie Dutil, Marcia Cruz, and Tuya Pal. 2023. "Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing" Current Oncology 30, no. 9: 8352-8362. https://doi.org/10.3390/curroncol30090606
APA StyleCragun, D., Manso, G., Arcusa, S. A., Zuniga, B., Dutil, J., Cruz, M., & Pal, T. (2023). Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing. Current Oncology, 30(9), 8352-8362. https://doi.org/10.3390/curroncol30090606