PPM9 PARTICIPANT SCREENING BEHAVIORS AND INFORMATION SHARING AFTER GENETIC TESTING

Abstract

To compare screening behavior to recommended guidelines and assess differences in information sharing behavior in individuals who underwent genetic testing for hereditary cancer risk through traditional and non-traditional models of testing. A quantitative retrospective computer-administered survey was used to analyze outcomes of individuals aged 18-90 years who received negative results (no mutations identified), and positive results (pathogenic mutation identified) in only the BRCA1, BRCA2, and Lynch syndrome genes MLH1, MSH2, MSH6, PMS2, and EPCAM. Individuals who received genetic testing through Color were invited to participate through email. Cancer screening actions were compared to screening recommendations by the National Comprehensive Cancer Network for Genetic/Familial High-Risk Assessment Breast and Ovarian, Genetic/Familial High-Risk Assessment Colorectal, and Breast Cancer Screening and Diagnosis. Testing was either ordered by a patient’s own provider (traditional model) or by a third-party network of physicians (non-traditional model). The analytic sample included 161 participants: 67 in the traditional channel (35 positive results, 32 negative results), and 94 (49 positive results, 45 negative results) in the non-traditional channel. After genetic testing, 71.4% of participants with positive results followed appropriate screening plans in the traditional model, compared to 59.2% in the non-traditional model, although not significant (p = 0.248). 68.8% of participants with negative results followed appropriate screening plans in the traditional model, and 64.4% in the non-traditional model (p = 0.694). 94.0% of participants with positive results and 66.2% with negative results reported sharing results with their healthcare provider. Genetic testing through a non-traditional model can educate about screening guidelines and spur knowledge and compliance to the same degree as a traditional model. Based on the results of the study, a non-traditional model of genetic testing is not inferior to the model of traditional genetic testing with respect to compliance with gene-specific recommendations.