Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education.

PURPOSE: We developed a web-based education intervention as an alternative to predisclosure education with a genetic counselor (GC) to reduce participant burden and provider costs with return of genetic research results. METHODS: Women at three sites who participated in 11 gene discovery research studies were contacted to consider receiving cancer genetic research results. Participants could complete predisclosure education through web education or with a GC. Outcomes included uptake of research results, factors associated with uptake, and patient-reported outcomes. RESULTS: Of 819 participants, 178 actively (21.7%) and 167 passively (20.4%) declined return of results; 474 (57.9%) were enrolled. Most (60.3%) received results although this was lower than the 70% uptake we hypothesized. Passive and active decliners were more likely to be Black, to have less education, and to have not received phone follow-up after the invitation letter. Most participants selected web education (88.5%) as an alternative to speaking with a GC, but some did not complete or receive results. Knowledge increased significantly from baseline to other time points with no significant differences between those who received web versus GC education. There were no significant increases in distress between web and GC education. CONCLUSION: Interest in web-based predisclosure education for return of genetic research results was high although it did not increase uptake of results. We found no negative patient-reported outcomes with web education, suggesting that it is a viable alternative delivery model for reducing burdens and costs of returning genetic research results. Attention to attrition and lower uptake of results among Black participants and those with less formal education are important areas for future research.

HIV and HCV screening among trauma patients.

The purpose of this study was to develop a hepatitis C virus (HCV) and HIV screening program for patients evaluated by the trauma service and link to care. Patients were offered screening for HCV antibody and HIV. Demographics were collected on gender, race, age, and history of intravenous drug use. A navigator connected patients to treatment. In total, 1160 trauma patients were screened for HCV and/or HIV. There were 162 (14%) patients with HCV antibodies. Patients who inject drugs comprised 39.5% (64) of the HCV antibody positive group. Forty-six (68.7%) patients received linkage to care services and 55 (34%) patients were actively engaged in treatment. There were 155 (10.5%) of all eligible patients screened for HIV. Twenty-one (13.5%) patients were living with HIV (PLWH) and there were two (1.3%) new HIV infections. All new PLWH were linked to care and a total of 14 (73.7%) PLWH were on antiretroviral therapy. This is the first HCV and HIV screening and linkage to care program of trauma surgery patients. In this interim program evaluation, we found high prevalence of HCV antibody and HIV prevalence and high linkage to care rates. Trauma service HCV and HIV screening is an opportunity to diagnose, link, and re-engage a vulnerable population.