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
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- 作者：Deborah J. MacDonald (1)
Julia Deri (1)
Charité Ricker (2)
Martin A. Perez (3)
Raquel Ogaz (1)
Nancy Feldman (4)
Lori A. Viveros (5)
Benjamin Paz (1)
Jeffrey N. Weitzel (1)
Kathleen R. Blazer (1) - 关键词：Latinas ; Cancer ; Genetics ; Oncology ; Patient conference ; Psychosocial
- 刊名：Familial Cancer
- 出版年：2012
- 出版时间：September 2012
- 年：2012
- 卷：11
- 期：3
- 页码：449-458
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Julia Deri (1)
Charité Ricker (2)
Martin A. Perez (3)
Raquel Ogaz (1)
Nancy Feldman (4)
Lori A. Viveros (5)
Benjamin Paz (1)
Jeffrey N. Weitzel (1)
Kathleen R. Blazer (1)
1. Division of Clinical Cancer Genetics, City of Hope—An NCI-Designated Comprehensive Cancer Center, 1500 E Duarte Rd, Duarte, CA, 91010, USA
2. Keck School of Medicine, University of Southern California, Los Angeles, CA, USA
3. Perez and Associates, A Professional Clinical Psychology Corp, Pasadena, CA, USA
4. Department of Medicine, Olive View-UCLA Medical Center, UCLA Jonsson Comprehensive Cancer Center, Los Angeles, CA, USA
5. Avon Cares for Life, Olive View-UCLA Medical Center, UCLA Jonsson Comprehensive Cancer Center, Los Angeles, CA, USA - ISSN：1573-7292
文摘
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; ?8?% 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.