Marc D. Schwartz

‘How Did That Make You Feel?’ Latinas' Use of Genetic Counseling and Testing for Hereditary Cancer Risk After Watching a Culturally Targeted Video and Receiving Patient Navigation

ABSTRACT Objective Culturally targeted narrative education is a promising approach to cancer prevention and control. This study evaluates the uptake of genetic counseling and testing (GCT) in Latinas at risk for hereditary breast and ovarian cancers (HBOC) after watching a culturally targeted narrative video and being navigated to GCT services. Methods Latina women at increased risk for HBOC were recruited through community‐based organizations. Participants responded to surveys before and after watching Spanish‐language telenovela‐style video. Surveys measured sociodemographic and clinical variables, HBOC and GCT knowledge, transportation with the story, identification with characters, and emotions elicited by the video. After watching video, participants were offered patient navigation services to free or low‐cost GCT and completed a 3‐month follow‐up phone survey to assess GCT uptake. Results Participants ( N  = 40) were 47.35 years old on average (SD = 9.48); all were born outside the United States. At the 3‐month follow‐up ( N  = 37), 27 (72.9%) and 26 (70.27%) participants had attended genetic counseling and genetic testing, respectively. U Mann Whitney tests found statistically significant differences between women who attended counseling versus those who did not at baseline knowledge ( U  = 216.00, p =  0.000) and distress elicited by the video ( U  = 73.5, p =  0.03). A logistic regression with distress elicited by the video as a predictive variable reached statististical significance ( β  = −0.27, p  = 0.037, CI 95% 0.58–0.98). Conclusions GCT uptake was promising, supporting a role for culturally targeted narrative video education along with a patient navigation component in increasing interest in cancer prevention and reducing healthcare disparities in HBOC genetic services. Trial Registration NCT03075540 (Initial release 2/22/2017)

Cultural adaptations to a telephone genetic counseling protocol and booklet for Latina breast cancer survivors at risk for hereditary breast and ovarian cancer

Abstract Telephone genetic counseling (TGC) is accepted as standard clinical care for people seeking hereditary cancer risk assessment. TGC has been shown to be non-inferior to in-person genetic counseling, but trials have been conducted with a predominantly highly educated, non-Hispanic White population. This article describes the process of culturally adapting a TGC protocol and visual aid booklet for Spanish-preferring Latina breast cancer survivors at risk for hereditary breast and ovarian cancers. The adaptation process included two phases. Phase 1 involved a review of the literature and recommendations from an expert team including community partners. Phase 2 included interviews and a pilot with the target population (n = 14) to collect feedback about the adapted protocol and booklet following steps from the Learner Verification and Revision Framework. We describe the adaptation process and report the main adaptations following the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME). Adaptations in Phase 1 were responsive to the target population needs and characteristics (e.g., delivered in Spanish at an appropriate health literacy level, addressing knowledge gaps, targeting cultural values). Phase 2 interviews were crucial to refine details (e.g., selecting words) and to add components to address GCT barriers (e.g., saliva sample video). Cultural adaptations to evidence-based TGC protocols can increase the fit and quality of care for historically underserved populations. As TGC visits become routine in clinical care, it is crucial to consider the needs of diverse communities to adequately promote equity and justice in cancer care.