JMIR Publications

ABSTRACT

Background:

All patients with invasive or high-grade ovarian cancer (OC) are recommended to take genetic testing (GT). However, the GT uptake rate among OC patients remains inadequate. The existing genetic counseling (GC) falls short in adequately addressing this challenge. Communication of information concerning cancer genetics and genetic services to patients needs to be improved to address patients’ GT-related literacy gaps and risk concerns.

Objective:

The study aims to investigate OC patients’ GT-related information needs to inform the design of interactive technology-based interventions that can enhance patients’ knowledge of GT and cancer genetics.

Methods:

We interviewed 20 OC patients who had taken GT and gathered GT-related messages from an active OC online community. The interview transcripts and online community messages were analyzed using the qualitative content analysis method.

Results:

Data analyses produced a comprehensive taxonomy of OC patients’ GT-related information needs, which includes five major topic clusters: knowledge of GT as a medical test, GT process, GT’s implications for patients, implications for family members, and medical terminologies. Patients want to receive information that is relevant, understandable, concise, usable, appropriate, hopeful, and accessible when needed. They prefer different channels to receive information, including interactive internet-based technologies, print, and conversations with healthcare providers.

Conclusions:

OC patients need a range of information to address uncertainties and challenges that they encounter while taking GT. Their preferences for channels to receive information varied widely. A multi-channel information delivery solution that supplements the existing GC is needed to effectively deliver such interventions to meet OC patients’ GT-related information needs.