Graduation Year

2023

Document Type

Thesis

Degree

M.S.P.H.

Degree Name

MS in Public Health (M.S.P.H.)

Degree Granting Department

Public Health

Major Professor

Deborah Cragun, Ph.D.

Committee Member

Tuya Pal, Ph.D.

Committee Member

Stefania Alastre Arcusa, MSPH

Keywords

cancer, education, genetic counseling, hereditary cancer

Abstract

Cancer genetic services (including genetic counseling and testing) help identify patients and families at increased risk of developing cancer so that steps can be taken to reduce risks or find cancers early. Receipt of genetic services in the Hispanic/Latinx population is low due, in part, to a shortage of Spanish-speaking genetic counselors. To address this concern, a 12-minute online tool designed to inform individuals about cancer genetic services was translated into Spanish. The objectives of this pilot study were to determine if the educational tool improves knowledge and informed decision making and to assess usability and appropriateness of the tool in the Hispanic/Latinx population. Individuals with a personal or family history of cancer were recruited at a Cancer Center in Puerto Rico as well as through social media and 41 completed a survey before and after viewing the tool. Additionally, 10 select participants completed a semi-structured interview in Spanish. Paired t-tests and Cohen’s d were calculated to assess for changes in knowledge and informed decision making. Interview transcripts were translated from Spanish to English and inductively coded and analyzed. Participants showed large increases in both knowledge scores (p<.001, ds=0.56) and feelings of being informed and empowered to decide about getting genetic testing (p<.001, ds=0.91). Despite significant improvements, 49% of participants did not feel fully informed and empowered after viewing the tool. Although participants found the tool aesthetically pleasing and easy to use with informative and valuable content, they also made recommendations for general improvement to be applied in future iterations. In addition, while some participants expressed understanding of topics covered in the tool, there were some who were still unclear. Results suggest this Spanish-language tool is user-friendly and appropriate at informing and empowering many individuals to decide about cancer genetic testing. However, individuals who are not fully informed and empowered after reviewing the tool may benefit from genetic counseling prior to testing.

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