A pilot randomized trial of an educational intervention to increase genetic counseling and genetic testing among Latina breast cancer survivors

Abstract

Latinas are less likely to participate in genetic counseling (GC) and genetic testing (GT) than non‐Hispanic Whites. A multisite, randomized pilot study tested a culturally targeted educational intervention to increase uptake of GC/GT among Latina breast cancer (BC) survivors (N = 52). Participants were recruited in Tampa, FL and Ponce, PR and randomized to: (a) fact sheet about BC survivorship (control) or (b) a culturally targeted educational booklet about GC/GT (intervention). Participants in the intervention condition were also offered no‐cost telephone GC followed by free GT with mail‐based saliva sample collection. Participants self‐reported hereditary breast and ovarian cancer (HBOC) knowledge and emotional distress at baseline and 1‐ and 3‐month follow‐ups. We used logistic regression to examine differences in GC/GT uptake by study arm (primary outcome) and repeated measures ANOVA to examine the effects of study arm and time on HBOC knowledge and emotional distress (secondary outcomes). Compared to the control arm, intervention participants were more likely to complete GC (ORIntervention = 13.92, 95% CI = 3.06–63.25, p < .01) and GT (ORIntervention = 12.93, 95% CI = 2.82–59.20, p < .01). Study site did not predict uptake of GC (p = .08) but Ponce participants were more likely to complete GT (ORPonce = 4.53, 95% CI = 1.04–19.72, p = .04). ANOVAs demonstrated an increase in HBOC knowledge over time across both groups (F(2,88) = 12.24, p < .01, ηp2 = 0.22). We also found a significant interaction of study arm and time, such that intervention participants demonstrated a greater and sustained (to the 3‐month follow‐up) increase in knowledge than control participants (F(2,88) = 3.66, p = .03, ηp2 = 0.08). No other main or interaction effects were significant (all p’s> .15). Study findings demonstrate the potential of our culturally targeted print intervention. Lessons learned from this multisite pilot study for enhancing GC/GT in Latinas include the need to attend to both access to GC/GT and individual factors such as attitudes and knowledge.

Genetic counseling, virtual visits, and equity in the era of COVID‐19 and beyond

“…Considerations for interventions should be across different levels of the socioecological model (Stokols, 1992 ) to ensure that individual‐level solutions and system‐level solutions are examined. Examples of solutions include culturally targeted and sensitive educational materials (Conley et al., 2021 ; Henderson et al., 2021 ), interactive digital programs (Wang et al., 2021 ), and patient outreach and system navigation efforts (Mays et al., 2012 ).…”

Cancer screening and breast cancer family history in Spanish-speaking Hispanic/Latina women in California

“…Lack of insurance and economic concerns often are the main barriers for obtaining a genetic risk assessment for hereditary breast and ovarian cancer, and limited English proficiency and cultural factors such as embarrassment, modesty and secrecy also reduce the rate of genetic testing ( 21 ). H/L are willing to engage and have a strong desire for counseling and screening despite barriers they experience ( 21 – 25 ), however, within a study of 1622 participants recruited through a state cancer registry and who reported receiving genetic testing, H/L were nearly two times less likely as NHW women to report discussing genetic testing with a health provider ( 26 , 27 ). A study on H/L found positive attitudes towards genetic testing for cancer prevention, with 87% agreeing it was a good idea and 87.7% agreeing that everyone should get genetic testing for cancer prevention ( 28 ).…”

Behavioral beliefs about genetic counseling among high‐risk Latina breast cancer survivors in Florida and Puerto Rico

“…Eligible participants were: (1) female BC survivors; (2) self‐identify as Latina/Hispanic; (3) age ≥25; (4) Spanish‐preferring; (5) GC/GT‐naïve (have not currently scheduled or previously attended GC/GT), and (6) eligible for GC/GT based on National Comprehensive Cancer Network guidelines 15 . Participants were recruited between January and June 2017 through clinic‐ and community‐based approaches 11,14 . Interested individuals called the study and a bilingual research assistant screened them for eligibility.…”

“… 14 All the participants in the intervention group and recruited in PR had access to no‐cost GC/GT during the study or after the study. 14 Moffitt Cancer Center (IRB #18601) and Ponce Health Sciences University‐Ponce Research Institute (IRB #160607‐EC) Institutional Review Boards approved study procedures. This study was conducted according to the guidelines of the Declaration of Helsinki.…”