Understanding the Information Needs of Patients With Ovarian Cancer Regarding Genetic Testing to Inform Intervention...

Area of Science:

• Gynecologic Oncology
• Genetics
• Patient Education

Background:

• Genetic testing is recommended for invasive or high-grade ovarian cancer (OC).
• Patients with OC frequently have unaddressed information needs about genetic testing.
• Current genetic counseling services do not adequately meet these needs.

Purpose of the Study:

• To investigate the genetic testing information needs of ovarian cancer patients.
• To inform the development of technology-based interventions for genetic testing communication.
• To improve patient understanding and engagement with genetic testing.

Main Methods:

• Qualitative content analysis of interviews with 20 OC patients who underwent genetic testing.
• Analysis of messages from an active online ovarian cancer community.
• Identification of key information needs and preferred delivery channels.

Main Results:

• A taxonomy of information needs was developed, covering test knowledge, process, implications for self and family, and medical terminology.
• Patients desire information that is relevant, understandable, concise, usable, appropriate, sympathetic, and timely.
• Preferred information channels include internet-based technologies, print materials, and healthcare provider discussions.

Conclusions:

• Ovarian cancer patients require comprehensive information to navigate genetic testing challenges.
• Patient preferences for information delivery are diverse, necessitating a flexible approach.
• A multichannel strategy integrating provider-led and peer-to-peer education is crucial to supplement genetic counseling and meet patient needs.