Kristi D Graves

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.

BRCA1/2 mutations and risk‐reducing bilateral salpingo‐oophorectomy among Latinas: The UPTAKE study

AbstractBilateral salpingo‐oophorectomy (BSO) is a risk management approach with strong evidence of mortality reduction for women with germline mutations in the tumor suppressor genes BRCA1 and BRCA2 (BRCA1/2). Few studies to date have evaluated uptake of BSO in women from diverse racial and ethnic backgrounds who carry BRCA1/2 mutations. The objective of the UPTAKE study was to explore rates and predictors of risk‐reducing BSO among Latinas affected and unaffected with breast cancer who had a deleterious BRCA1/2 mutation. We recruited 100 Latina women with deleterious BRCA1/2 mutations from community hospitals, academic health systems, community, and advocacy organizations. Women completed interviews in Spanish or English. We obtained copies of genetic test reports for participants who provided signed medical release. After performing threefold cross‐validation LASSO for variable selection, we used multiple logistic regression to identify demographic and clinical predictors of BSO. Among 100 participants, 68 had undergone BSO at the time of interview. Of these 68, 35 were US‐born (61% of all US‐born participants) and 33 were not (77% of the non‐US‐born participants). Among Latinas with BRCA1/2 mutations, older age (p = 0.004), personal history of breast cancer (p = 0.003), higher income (p = 0.002), and not having a full‐time job (p = 0.027) were identified as variables significantly associated with uptake of BSO. Results suggest a high rate of uptake of risk‐reducing BSO among a sample of Latinas with BRCA1/2 mutations living in the US. We document factors associated with BSO uptake in a diverse sample of women. Relevant to genetic counseling, our findings identify possible targets for supporting Latinas’ decision‐making about BSO following receipt of a positive BRCA1/2 test.

Stigma, social support, and spirituality: associations with symptoms among Black, Latina, and Chinese American cervical cancer survivors

Few studies have examined experiences of stigma and factors associated with symptoms among cervical cancer survivors from diverse racial and ethnic backgrounds. We investigated survivorship experiences and patient-reported outcomes in the SPADE symptom cluster (sleep disturbance, pain interference, anxiety, depression, and energy/fatigue) among Black, Latina, and Chinese American women diagnosed with cervical cancer. In two phases of research with cervical cancer survivors, we collected qualitative data through individual interviews (N=12; recruited through community referrals) and quantitative data from an observational cohort study (N=91; recruited through 4 national cancer registries). We coded interview transcripts to describe the survivors' experiences. We then evaluated associations between social support, spirituality, and SPADE symptom cluster domains using linear regression models. Qualitative analysis yielded four themes: perceptions of stigma, empowerment, physical and psychological effects, and social support. These concepts revolved around internal and external stigmas, emotional responses, strengthened faith, and different social support types. Quantitative analyses indicated that greater spirituality was associated with lower symptom burden on all five SPADE domains (p<0.01). We observed nuanced associations between specific types of social support and SPADE domains. The survivorship experiences of Black, Latina, and Chinese American women with cervical cancer are negatively influenced by perceptions of stigma. Higher scores on spirituality and varied types of social support were significantly associated with fewer symptoms in the SPADE symptom cluster. Results suggest targets for future interventions to reduce symptom burden among women diagnosed with cervical cancer by leveraging spirituality and social support.