Honoramos a todas nuestras madres con el don del conocimiento: A conference to learn the needs of Latina patients and families seen for breast cancer risk assessment

Abstract Background: Long-term follow-up surveys of Spanish-speaking Latina patients at increased risk for hereditary breast cancer who completed genetic cancer risk assessment (GCRA) in our underserved clinics revealed a need for ongoing education and support. Consequently, we invited patients back for a half-day educational conference, employing mixed methods research to better understand their medical and social/cultural issues and needs.Aims: The conference aims were to: 1) share medical advances in GCRA and cancer screening and prevention recommendations and resources and 2) explore GCRA-related experiences and needs, and access to risk-appropriate care.Methods: Invitees were Latina patients with personal and/or family history of breast cancer who completed GCRA between 2001-2009 and their family members. The conference, conducted entirely in Spanish, was held at the regional county medical facility where our underserved clinic is conducted. Educational information was delivered by podium-presentations, expert and patient panel discussions and interactive sessions and community resource booth exhibits. Mixed methods research (surveys and Audio Response System [ARS] mediated interaction and discussion) was used to explore GRCA experiences and access to care.Results: The 71 primarily Spanish speaking (96%) participants ranged in age from 18 to 71 years (mean age, 44), were female (93%), had children (78%), and had at least completed high school (71%). Of the 41 patient-participant, 78% were accompanied by at least one family member and/or friend. Thirty (73%) had a personal history of breast cancer; 4 also had ovarian cancer. Of the 35 tested, 20 (57%) were BRCA positive. Nearly all participants (96%) completed the voluntary survey and post-conference evaluation. On average, 87% responded to eight ARS questions related to the GCRA process and access to care. The majority of patient-participant (71%) understood why they were referred for GCRA, 15% did not, and 13% were uncertain. Eighty percent understood their cancer risk; however 20% expressed a need for more risk information. Although 83% understood cancer screening recommendations, 17% were unsure and requested more information. Interestingly, only 5% reported lack of access to care. More than 75% found the GCRA process stressful and desired more support and preparedness for sharing information with relatives. All responders (96%) reported that the conference met their expectations, valued the resources provided, and suggested allocating more time for questions in a future conference.Conclusion: The interactive conference format was highly rated and effective in providing Latina breast cancer patients and family members with ongoing education and support following GCRA, and provided important information to guide improvement in the risk assessment process. Citation Information: Cancer Res 2009;69(24 Suppl):Abstract nr 3073.