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.
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.
Division of Clinical Cancer Genetics, City of Hope-an NCI-Designated Comprehensive Cancer Center, 1500 E Duarte Rd, Duarte, CA 91010, USA. dmacdonald@coh.org
Deborah J
DJ
Macdonald
Julia
J
Deri
Charité
C
Ricker
Martin A
MA
Perez
Raquel
R
Ogaz
Nancy
N
Feldman
Lori A
LA
Viveros
Benjamin
B
Paz
Jeffrey N
JN
Weitzel
Kathleen R
KR
Blazer
D000293:Adolescent; D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D005190:Family; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006302:Health Services Research; D006630:Hispanic or Latino / Q000235:genetics* / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D018570:Risk Assessment; D035862:Vulnerable Populations; D055815:Young Adult