The Comprehensive Cancer Network (NCCN) recommends genetic cancer risk assessment (GCRA) referral to women at high risk of hereditary breast and ovarian cancer. Latinas affected by breast cancer have the second highest prevalence of BRCA1/2 mutations after Ashkenazi Jews. Compared to non-Hispanic Whites, Latinas have lower GCRA uptake. While some studies have identified barriers for GCRA use in this population, few studies have focused on health care providers’ perspectives. The purpose of the study was to examine providers’ perceptions of barriers and facilitators for at-risk Latina women to participate in GCRA and their experiences providing services to this population. We conducted semi-structured interviews with 20 healthcare providers (e.g., genetic counselors, patient navigators) recruited nationally through snowballing. Interviews were transcribed. Two coders independently coded each interview and then met to reconcile the codes using Consensual Qualitative Research guidelines. Providers identified several facilitators for GCRA uptake (e.g., family, treatment/prevention decisions) and barriers (e.g., cost, referrals, awareness, stigma). Genetic counselors described important aspects to consider when working with at-risk Latina including language barriers, obtaining accurate family histories, family communication, and testing relatives who live outside the US. Findings from this study can inform future interventions to enhance uptake and quality of GCRA in at-risk Latina women to reduce disparities.
Disparities in genetic cancer risk assessment (GCRA) uptake persist between Latinas and Non‐Hispanic Whites. This study utilized a mental model approach to interview 20 Latinas (10 affected, 10 unaffected) at increased risk for hereditary breast and ovarian cancer (HBOC). Participants were asked about their knowledge and perceptions of GCRA, HBOC, risk, benefits, motivators, barriers, challenges, and experiences with GCRA. Using the Consensual Qualitative Analysis Framework, two authors independently coded the interviews and applied the final codes upon consensus. Additionally, interviews were coded to identify whether participants spontaneously brought up certain topics without a prompt. Findings identified multiple barriers and facilitators to GCRA uptake in this population, including patient level psychosocial/cultural factors (e.g., limited knowledge, worry about relatives’ risk) and healthcare system factors (e.g., receiving no referrals). There were notable differences in awareness and knowledge between affected and unaffected women (e.g., genetic testing awareness), as well as knowledge gaps that were evident in both groups (e.g., age of diagnosis as a risk factor). To reduce disparities in GCRA uptake, interventions should address identified facilitators and barriers. Differences in knowledge and awareness between affected and unaffected women support the development of targeted interventions that address specific knowledge gaps. This study was registered in ClinicalTrials.gov (NCT03075540) by Alejandra Hurtado de Mendoza, Ph.D.
ObjectiveTo describe the first dedicated clinic in the UK for children with suspected or confirmed female genital mutilation (FGM) including referral patterns, clinical findings and subsequent management.Design and settingA prospective study of all children seen in a dedicated multidisciplinary FGM clinic for children over a 1-year period.PopulationPatients aged under 18 years referred for clinical assessment or for a second opinion on Digital Versatile Disc (DVD) images.Methods and main outcome measuresData were collected on reasons for referral, demography, genital examination findings including FGM type, and clinical recommendations.Results38 children were referred of whom 18 (47%) had confirmed FGM; most frequently type 4 (61%). Social care and police referred 78% of cases. According to UK law FGM had been performed illegally in three cases. Anonymous information given to the police led to the referral of six children, none of whom had had FGM.ConclusionsMandatory reporting and increased media attention may increase the numbers of referrals of children with suspected FGM. This patient group have complex needs and management in a dedicated multidisciplinary service is essential. Paediatricians and gynaecologists should have the skills to carry out the consultation and detect all types of FGM including type 4 which was the most common type seen in this series. This is the first dedicated FGM service for children in the UK and similar clinics in high-prevalence areas should be established.
Disparities for genetic cancer risk assessment (GCRA) for hereditary breast and ovarian cancer (HBOC) persist between Latina and non-Hispanic Whites. There are few tested culturally targeted interventions. We developed a culturally targeted video to enhance GCRA uptake in at-risk Latinas. Interviews with healthcare providers (n = 20) and at-risk Latinas (n = 20) were conducted as formative research to inform the development of the video. Findings from the formative research, health behavior conceptual models, and evidence-based risk communication strategies informed the messages for the script. Then, we conducted a focus group with at-risk Latinas (n = 7) to obtain feedback for final refinement of the script. The final video was piloted for acceptability and potential dissemination in a sample of Latino community health workers (CHWs) (n = 31). Providers and at-risk Latinas suggested using simple language and visual aids to facilitate comprehension. Participants in the focus group identified areas for further clarification (e.g., cost). The result was an 18-min video that illustrates BRosa's^story. Rosa learns about HBOC risk factors and overcomes barriers to attend genetic counseling. CHWs reported high overall satisfaction with the video (M = 9.61, SD = .88, range 1-10). A culturally targeted video has the potential to reach underserved populations with low literacy and English proficiency.
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