Advertisement

Journal of Community Genetics

, Volume 8, Issue 1, pp 53–63 | Cite as

Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care

  • Vivian M. Rodríguez
  • Erika Robers
  • Kate Zielaskowski
  • C. Javier González
  • Keith Hunley
  • Kimberly A. Kaphingst
  • Dolores D. Guest
  • Andrew Sussman
  • Kirsten A. Meyer White
  • Matthew R. Schwartz
  • Jennie Greb
  • Yvonne Talamantes
  • Jessica Bigney
  • Marianne Berwick
  • Jennifer L. Hay
Original Article

Abstract

Genomic medicine has revolutionized disease risk identification and subsequent risk reduction interventions. Skin cancer risk genomic feedback is a promising vehicle to raise awareness and protective behaviors in the general population, including Hispanics who are largely unaware of their risks. Yet, personalized genomics currently has limited reach. This study is the initial phase of a randomized controlled trial investigating the personal utility and reach of genomic testing and feedback for melanoma. Semi-structured cognitive interviews (N = 28), stratified across education level, were conducted to assess the comprehension and acceptability of translated skin cancer genomic risk education materials with Spanish-speaking Hispanic primary care patients. Overall, materials were comprehensible and acceptable with 33 of 246 terms/concepts identified as difficult. Common problems included translation challenges (e.g., peeling from sunburn), ambiguous concepts (e.g., healthcare system), and problematic terms (e.g., risk version). Aiming to expand the reach of genomic medicine across subpopulations that may benefit from it, necessary modifications were made to education materials to improve comprehensibility, acceptability, and cultural relevance.

Keywords

Cognitive interviews Melanoma Genetic testing MC1R Hispanics 

Notes

Compliance with ethical standards

Funding/support

This work was supported by the National Cancer Institute’s Research Grant (R01 CA181241-01A1) and Support/Core Grant (P30 CA008748). Dr. Rodríguez was supported by a training grant (T32 CA009461).

Conflict of interest

Vivian M. Rodríguez declares that she has no conflict of interest. Erika Robers declares that she has no conflict of interest. Kate Zielaskowski declares that she has no conflict of interest. C. Javier González declares that he has no conflict of interest. Keith Hunley declares that he has no conflict of interest. Kimberly A. Kaphingst declares that she has no conflict of interest. Dolores D. Guest declares that she has no conflict of interest. Andrew Sussman declares that he has no conflict of interest. Kirsten A. Meyer White declares that she has no conflict of interest. Matthew R. Schwartz declares that he has no conflict of interest. Jennie Greb declares that she has no conflict of interest. Yvonne Talamantes declares that she has no conflict of interest. Jessica Bigney declares that she has no conflict of interest. Marianne Berwick declares that she has no conflict of interest. Jennifer L. Hay declares that she has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Berrigan D, Forsyth BH, Helba C, Levin K, Norberg A, Willis GB (2010) Cognitive testing of physical activity and acculturation questions in recent and long-term Latino immigrants. BMC Public Health 10:481. doi: 10.1186/1471-2458-10-481 CrossRefPubMedPubMedCentralGoogle Scholar
  2. Bills GD, Vigil NA (2008) The Spanish language of New Mexico and Southern Colorado: a linguistic atlas. University of New Mexico Press, AlbuquerqueGoogle Scholar
  3. Bloss CS, Ornowski L, Silver E, Cargill M, Vanier V, Schork NJ, Topol EJ (2010) Consumer perceptions of direct-to-consumer personalized genomic risk assessments. Genetics in Medicine 12:556–566. doi: 10.1097/GIM.0b013e3181eb51c6 CrossRefPubMedGoogle Scholar
  4. Drake BF et al (2016) Development of plain language supplemental materials for the Biobank informed consent process. Journal of Cancer Education: the Official Journal of the American Association for Cancer Education. doi: 10.1007/s13187-016-1029-y Google Scholar
  5. Graves KD, Hay JL, O'Neill SC (2014) The promise of using personalized genomic information to promote behavior change: is the debate over, or just beginning? Personalized Medicine 11:173–185. doi: 10.2217/pme.13.110 CrossRefGoogle Scholar
  6. Green ED, Guyer MS (2011) Charting a course for genomic medicine from base pairs to bedside. Nature 470:204–213. doi: 10.1038/nature09764 CrossRefPubMedGoogle Scholar
  7. Halbert CH, Kessler L, Collier A, Weathers B, Stopfer J, Domchek S, McDonald JA (2012) Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference? J Genet Couns 21:676–683. doi: 10.1007/s10897-012-9485-y CrossRefPubMedPubMedCentralGoogle Scholar
  8. Hamilton JG et al (2016) Genetic testing awareness and attitudes among Latinos: exploring shared perceptions and gender-based differences. Public Health Genomics 19:34–46. doi: 10.1159/000441552 CrossRefPubMedGoogle Scholar
  9. Harkness JA, Villar A, Edwards B (2010) Translation, adaptation, and design. In: Harkness JA et al (eds) Survey methods in multinational, multicultural and multiregional contexts. Wiley, Hoboken, NJ, pp. 117–140CrossRefGoogle Scholar
  10. Hay JL, Brennessel D, Kemeny MM, Lubetkin EI (2016) Examining intuitive cancer risk perceptions in Haitian-Creole and Spanish-speaking populations. J Transcult Nurs 27:368–375. doi: 10.1177/1043659614561679 CrossRefPubMedGoogle Scholar
  11. Hensley Alford S, McBride CM, Reid RJ, Larson EB, Baxevanis AD, Brody LC (2011) Participation in genetic testing research varies by social group. Public Health Genomics 14:85–93. doi: 10.1159/000294277 CrossRefPubMedGoogle Scholar
  12. Hindorff LA, Sethupathy P, Junkins HA, Ramos EM, Mehta JP, Collins FS, Manolio TA (2009) Potential etiologic and functional implications of genome-wide association loci for human diseases and traits. Proc Natl Acad Sci U S A 106:9362–9367. doi: 10.1073/pnas.0903103106 CrossRefPubMedPubMedCentralGoogle Scholar
  13. Hu S, Parmet Y, Allen G, Parker DF, Ma F, Rouhani P, Kirsner RS (2009) Disparity in melanoma: a trend analysis of melanoma incidence and stage at diagnosis among whites, Hispanics, and blacks in Florida. Arch Dermatol 145:1369–1374. doi: 10.1001/archdermatol.2009.302 PubMedGoogle Scholar
  14. Kaphingst KA, Goodman MS (2016) Importance of race and ethnicity in individuals' use of and responses to genomic information. Personalized Medicine 13:1–4. doi: 10.2217/pme.15.39 CrossRefGoogle Scholar
  15. Kaphingst KA, Stafford JD, McGowan LD, Seo J, Lachance CR, Goodman MS (2015) Effects of racial and ethnic group and health literacy on responses to genomic risk information in a medically underserved population. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 34:101–110. doi: 10.1037/hea0000177 CrossRefGoogle Scholar
  16. Komenaka IK et al (2016) Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net institution. Journal of Community Genetics 7:177–183. doi: 10.1007/s12687-015-0257-x CrossRefPubMedGoogle Scholar
  17. McBride CM, Abrams LR, Koehly LM (2015) Using a historical lens to envision the next generation of genomic translation research. Public Health Genomics 18:272–282. doi: 10.1159/000435832 CrossRefPubMedGoogle Scholar
  18. McBride CM et al (2010) Future health applications of genomics: priorities for communication, behavioral, and social sciences research. Am J Prev Med 38:556–565. doi: 10.1016/j.amepre.2010.01.027 CrossRefPubMedPubMedCentralGoogle Scholar
  19. National Academy of Sciences, Engineering, and Medicine (2016) Applying an implementation science approach to genomic medicine: workshop summary. Washington, DC. doi:107226/23403Google Scholar
  20. Nodora JN et al (2016) Biospecimen sharing among Hispanic women in a safety-net clinic: implications for the precision medicine initiative. J Natl Cancer Inst:109. doi: 10.1093/jnci/djw201
  21. Pagan JA, Su D, Li L, Armstrong K, Asch DA (2009) Racial and ethnic disparities in awareness of genetic testing for cancer risk. Am J Prev Med 37:524–530. doi: 10.1016/j.amepre.2009.07.021 CrossRefPubMedGoogle Scholar
  22. Petruccio C et al (2008) Healthy choices through family history: a community approach to family history awareness. Community Genetics 11:343–351. doi: 10.1159/000133306 PubMedGoogle Scholar
  23. Santiago-Rivas M, Wang C (2014) Sun protection beliefs among Hispanics in the US 2014:161960 doi: 10.1155/2014/161960Google Scholar
  24. Simmons VN et al (2011) Transcreation of validated smoking relapse-prevention booklets for use with Hispanic populations. J Health Care Poor Underserved 22:886–893. doi: 10.1353/hpu.2011.0091 CrossRefPubMedPubMedCentralGoogle Scholar
  25. Solomon FM, Eberl-Lefko AC, Michaels M, Macario E, Tesauro G, Rowland JH (2005) Development of a linguistically and culturally appropriate booklet for Latino cancer survivors: lessons learned. Health Promot Pract 6:405–413. doi: 10.1177/1524839905278447 CrossRefPubMedGoogle Scholar
  26. Sussner KM et al (2011) Ethnic, racial and cultural identity and perceived benefits and barriers related to genetic testing for breast cancer among at-risk women of African descent in New York City. Public Health Genomics 14:356–370. doi: 10.1159/000325263 CrossRefPubMedPubMedCentralGoogle Scholar
  27. Suther S, Kiros GE (2009) Barriers to the use of genetic testing: a study of racial and ethnic disparities. Genetics in Medicine: Official Journal of the American College of Medical Genetics 11:655–662. doi: 10.1097/GIM.0b013e3181ab22aa CrossRefGoogle Scholar
  28. Torres SM, Ramos M, Leverence R, Bowen D, Berwick M, Hay J (2014) A pilot study of skin cancer risk reduction behaviors, cancer communicatin, and skin cancer beliefs in Hispanics California. Journal of Health Promotion 12:95–100Google Scholar
  29. Udayakumar D, Tsao H (2009) Moderate- to low-risk variant alleles of cutaneous malignancies and nevi: lessons from genome-wide association studies. Genome Medicine 1:95. doi: 10.1186/gm95 CrossRefPubMedPubMedCentralGoogle Scholar
  30. Weitzel JN, Blazer KR, MacDonald DJ, Culver JO, Offit K (2011) Genetics, genomics, and cancer risk assessment: state of the art and future directions in the era of personalized medicine CA. A Cancer Journal for Clinicians 61:327–359. doi: 10.3322/caac.20128 Google Scholar
  31. Wells KJ et al (2013) Feasibility trial of a Spanish-language multimedia educational intervention. Clinical Trials (London, England) 10:767–774. doi: 10.1177/1740774513495984 CrossRefGoogle Scholar
  32. Willis G (2005) Cognitive interviewing: a tool for improving questionnaire design. SAGE Publications, Inc., Thousand Oaks, CACrossRefGoogle Scholar
  33. Willis G, Lawrence D, Hartman A, Stapleton Kudela M, Levin K, Forsyth B (2008) Translation of a tobacco survey into Spanish and Asian languages: the tobacco use supplement to the current population survey. Nicotine & Tobacco Research: Official Journal of the Society for Research on Nicotine and Tobacco 10:1075–1084. doi: 10.1080/14622200802087572 CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Vivian M. Rodríguez
    • 1
  • Erika Robers
    • 2
  • Kate Zielaskowski
    • 1
  • C. Javier González
    • 1
  • Keith Hunley
    • 2
  • Kimberly A. Kaphingst
    • 3
  • Dolores D. Guest
    • 2
  • Andrew Sussman
    • 2
  • Kirsten A. Meyer White
    • 2
  • Matthew R. Schwartz
    • 2
  • Jennie Greb
    • 2
  • Yvonne Talamantes
    • 2
  • Jessica Bigney
    • 2
  • Marianne Berwick
    • 2
  • Jennifer L. Hay
    • 1
  1. 1.Memorial Sloan Kettering Cancer CenterNew YorkUSA
  2. 2.University of New MexicoAlbuquerqueUSA
  3. 3.University of UtahSalt Lake CityUSA

Personalised recommendations