ASPO Abstracts
A Qualitative Exploration of Ovarian Cancer Patient Perspectives on Genetic Counseling and Testing
Category: Behavioral Science & Health Communication
Conference Year: 2020
Abstract Body:
Purpose:To explore patient-reported barriers and facilitators to genetic counseling (GC) and genetic testing
(GT) in ovarian cancer (OC).
Method:Nine OC patients completed semi-structured qualitative interviews regarding their knowledge and
experiences with GC/GT. Interviews were audio recorded, transcribed, and analyzed using inductive content
analysis. Raters collaboratively developed a codebook after initial transcript review; the codebook was
iteratively refined based on emergent themes. Four of 9 (44%) transcripts were independently coded by two
raters. Coding disagreements were resolved through discussion until consensus was reached. The remaining
five transcripts were split between the two raters.
Results:All participants reported receiving GT, but many could not recall participating in GC. The most
commonly reported facilitator of GC/GT was gaining knowledge about risk of genetically inherited cancer that
could inform the future health of family members. Participants also reported that social factors, including
hearing about GC/GT via “word of mouth” and GC/GT referral from providers, were important for pursuing
GC/GT. Barriers included lack of knowledge about GC/GT, negative emotions (e.g., anxiety, guilt), and
insurance/cost. Although all participants had completed GT, many demonstrated inaccuracy and confusion
about GC/GT concepts during interviews. Participants’ primary suggestion for improvement was increasing
both patient and provider knowledge about genetic topics and/or available genetics services. All participants
mentioned positive experiences disclosing GT results to family, and most discussed importance of testing at-
risk family members.
Conclusions:Results reveal OC patients were motivated to pursue genetic services when considering future
inherited risks to family members; participants also conveyed positive experiences disclosing GT results to
family. Additionally, findings highlight lack of knowledge about GC/GT indicating that providers may not be
communicating GC/GT principles in a way that participants remember accurately. Family-centered
interventions are needed that provide information about GC/GT processes and concepts, and that emphasize
that GC/GT can enhance OC patient care and family members’ knowledge of their own risk.
Keywords: ovarian cancer, genetic counseling, genetic testing