Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing

Author:

Cragun Deborah1,Manso Gretter2,Arcusa Stefania Alastre3,Zuniga Brenda4,Dutil Julie56,Cruz Marcia57,Pal Tuya4

Affiliation:

1. College of Public Health, University of South Florida, Tampa, FL 33620, USA

2. Department of Human Genetics, University of Miami Miller School of Medicine, Miami, FL 33124, USA

3. Moffitt Cancer Center, Tampa, FL 33612, USA

4. Vanderbilt–Ingram Cancer Institute, Nashville, TN 37232, USA

5. University of Puerto Rico Comprehensive Cancer Center, San Juan, PR 00936, USA

6. Ponce Research Institute, Ponce Health Sciences University, Ponce, PR 00716, USA

7. Department of Medicine, Medical Sciences Campus, University of Puerto Rico, San Juan, PR 00935, USA

Abstract

The delivery of hereditary cancer pre-test education among Spanish-language patients is impeded by the dearth of Spanish-speaking genetic counselors. To address this gap, we evaluated a web-based genetic education tool delivered in Spanish to provide information typically discussed during an initial genetic counseling session. Spanish-speaking patients with a personal or family history of cancer were recruited at two centers in Puerto Rico and through social media. A total of 41 participants completed a survey before and after viewing the tool to measure knowledge, attitudes, and decisional empowerment. A subset of 10 participants completed a virtual semi-structured interview to assess the usability and appropriateness of the tool. Paired t-tests were calculated to evaluate changes in knowledge and attitudes. A McNemar test assessed for decisional empowerment. Interview transcripts were translated from Spanish to English and inductively coded and analyzed. Results revealed significant increases in knowledge (p < 0.001), while attitudes about genetic testing did not change (p = 0.77). The proportion of individuals who felt fully informed and empowered to decide about whether to undergo genetic testing increased from 15% to 51% (p < 0.001). Qualitative data indicated that participants found the tool easy to use with informative and valuable content. Our findings suggest this Spanish-language tool is a user-friendly and scalable solution to help inform and empower many individuals to decide about cancer genetic testing, recognizing that others may still benefit from genetic counseling prior to testing.

Funder

Florida Association of Genetic Counselors

Publisher

MDPI AG

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