Details

Autor(en) / Beteiligte

• Greve, Veronica
• Odom, Katherine
• Pudner, Susanna
• Lamb, Neil E.
• Cooper, Sara J.
• East, Kelly

Titel

Characteristics and experiences of patients from a community-based and consumer-directed hereditary cancer population screening initiative

Ist Teil von

• HGG advances, 2022-01, Vol.3 (1), p.100055-100055, Article 100055

Ort / Verlag

United States: Elsevier Inc

Erscheinungsjahr

2022

Link zum Volltext

Quelle

Electronic Journals Library - Freely accessible e-journals

Beschreibungen/Notizen

• A clinical hereditary cancer population screening initiative, called Information is Power, began in North Alabama in 2015. After 4 years of the initiative, we were interested in exploring (1) the characteristics and motivations for patients who self-refer to population genetic testing, (2) how patients make decisions on testing, (3) what patients do with results, and (4) patient perceptions of benefits and limitations after undergoing population genetic testing. Patients who consented to research recontact at time of test ordering were sent an electronic survey with the option for a follow-up phone interview. Among the 2,918 eligible patients, 239 responded to the survey and 19 completed an interview. Survey and interview participants were highly educated information seekers motivated by learning more about their health. Those who were previously interested in hereditary cancer testing reported barriers were cost and insurance coverage, access to testing, and uncertainty how results could impact their health. Many participants (77%) communicated with family and friends about their decision to test and communicated about test results. Fewer participants (23%) discussed the decision to test with their healthcare providers; however, 58% of participants discussed their test results with a healthcare provider. Most people (96%) with negative results accurately recalled their results. In contrast, three out of 11 positive results for heterozygous MUTYH, PALB2, and BRCA2 reported receiving negative results. This study contributes to knowledge on population genetic testing and may guide other population genetic testing programs as they develop enrollment materials and educational materials and consider downstream needs of population genetic testing participants. Participants in a consumer-directed hereditary cancer screening program based in Northern Alabama were surveyed and interviewed regarding their motivations, result communication, and perceptions of consumer-directed testing. While participants were generally positive about the process, three out of 11 participants with positive test results incorrectly reported they received a negative result.