Understanding the Information Needs of Patients With Ovarian Cancer Regarding Genetic Testing to Inform Intervention Design: Interview Study

Abstract

Background: Experts in gynecological cancer care recommend that all patients with invasive or high-grade ovarian cancer (OC) undergo genetic testing. However, even patients who intend to take or have taken genetic tests have many unaddressed information needs regarding genetic testing. Existing genetic counseling falls short of adequately addressing this challenge. Objective: This study aims to investigate the genetic testing–related information needs of patients with OC to inform the design of interactive technology-based interventions that can enhance communication of genetic testing information to patients. Methods: We interviewed 20 patients with OC who had taken genetic tests and gathered genetic testing–related messages from an active OC web-based community. The interview transcripts and web-based community messages were analyzed using the qualitative content analysis method. Results: Data analyses produced a comprehensive taxonomy of the genetic testing–related information needs of patients with OC, which included five major topic clusters: knowledge of genetic testing as a medical test, genetic testing process, genetic testing implications for patients, implications for family members, and medical terminology. Findings indicated that patients wanted to receive information that was relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed. They also preferred various channels to receive information, including internet-based technologies, print, and conversations with health care providers. Conclusions: Patients with OC need a range of information to address the uncertainties and challenges that they encounter while taking genetic tests. Their preferences for channels to receive information vary widely. A multichannel information delivery solution that combines both provider-led and peer-to-peer education models is needed to supplement existing genetic counseling to effectively meet the genetic testing–related information needs of patients with OC.