Abstract
A patient/family-centered conference was conducted at an underserved community hospital to address Latinas’ post-genetic cancer risk assessment (GCRA) medical information and psychosocial support needs, and determine the utility of the action research format. Latinas seen for GCRA were recruited to a half-day conference conducted in Spanish. Content was partly determined from follow-up survey feedback. Written surveys, interactive discussions, and Audience Response System (ARS) queries facilitated the participant-healthcare professional action research process. Analyses included descriptive statistics and thematic analysis. The 71 attendees (41 patients and 27 relatives/friends) were primarily non-US born Spanish-speaking females, mean age 43 years. Among patients, 73 % had a breast cancer history; 85 % had BRCA testing (49 % BRCA+). Nearly all (96 %) attendees completed the conference surveys and ARS queries; ≥48 % participated in interactive discussions. Most (95 %) agreed that the format met their personal interests and expectations and provided useful information and resources. Gaps/challenges identified in the GCRA process included pre-consult anxiety, uncertainty about reason for referral and expected outcomes, and psychosocial needs post-GCRA, such as absorbing and disseminating risk information to relatives and concurrently coping with a recent cancer diagnosis. The combined action research and educational conference format was innovative and effective for responding to continued patient information needs and addressing an important data gap about support needs of Latina patients and family members following genetic cancer risk assessment. Findings informed GCRA process improvements and provide a basis for theory-driven cancer control research.
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Notes
‘Latino’ is the most common consensus term for individuals of Spanish, Mexican, Central and South American, Cuban or Puerto Rican origin and is generally considered a more ethnically/culturally based term for individuals of the aforementioned groups.
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Acknowledgments
Funding for the conference was provided by the Regents of the University of California Breast Cancer Research Program, Grant Number 14MG-0189, and the Los Angeles County affiliate of Susan G. Komen for the Cure and in part by a General Clinical Research Center grant from NIH (M01RR00043). The conference was sponsored by Avon Cares for Life, Olive View–UCLA Medical Center. The authors are grateful to the patient panel members and participants for openly sharing their experiences and insights, and the community exhibitors for their time and materials. We also thank the planning committee including Angela Garrido, RN, NP, and OVMC cancer genetics clinic coordinator Evelyn Escobedo; genetic counselors Kimberly Banks, Cheryl Cina, Aura Janze, and Jocelyn Chappell, RN, MSN; Chrissy Kim of the ACS; Katherine McKenzie, PhD of the CBCRP; Noemi Maldonado; conference coordinator Gloria Nuñez; Sharon Sand, Jerry Ruiz (in memoriam) and other COH and OVMC staff who provided logistical support, and Aparna Desai, Shawntel Payton, and Tracy Sulkin for assistance with manuscript preparation.
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All human studies have been approved by the appropriate ethics committee and have therefore been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All persons gave their informed consent prior to their inclusion in the study.
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The authors declare that they have no conflicts of interest.
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MacDonald, D.J., Deri, J., Ricker, C. et al. Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment. Familial Cancer 11, 449–458 (2012). https://doi.org/10.1007/s10689-012-9535-5
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DOI: https://doi.org/10.1007/s10689-012-9535-5