Information practices around genetic testing for ovarian cancer patients

Abstract

Knowledge of ovarian cancer patients' information practices around cancer genetic testing (GT) is needed to inform interventions that promote patient access to GT‐related information. We interviewed 21 ovarian cancer patients and survivors who had GT as part of the treatment process and analyzed the transcripts using the qualitative content analysis method. We found that patients' information practices, manifested in their information‐seeking mode, information sources utilized, information assessment, and information use, showed three distinct styles: passive, semi‐active, and active. Patients with the passive style primarily received information from clinical sources, encountered information, or delegated information‐seeking to family members; they were not inclined to assess information themselves and seldom used it to learn or influence others. Women with semi‐active and active styles adopted more active information‐seeking modes to approach information, utilized information sources beyond clinical settings, attempted to assess the information found, and actively used it to learn, educate others, or advocate GT to family and friends. Guided by the social ecological model, we found multiple levels of influences, including personal, interpersonal, organizational, community, and societal, acting as motivators or barriers to patients' information practice. Based on these findings, we discussed strategies to promote patient access to GT‐related information.