ArticleJMIR cancer2022
Understanding the Information Needs of Patients With Ovarian Cancer Regarding Genetic Testing to Inform Intervention Design: Interview Study.
Article in JMIR cancer, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The experience and supportive care needs in people affected by ovarian cancer and their informal caregivers: a qualitative systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Pooled it
- Informational needs in vulvar cancer and precursor conditions: a social listening study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Awareness, uptake, and determinants of germline genetic testing in Chinese epithelial ovarian cancer patients: a cross-sectional study.Frontiers in oncology · 2026Article
- The use of internet for health information by hospitalised patients in Switzerland and Qatar: a comparative cross-sectional study.Journal of pharmaceutical policy and practice · 2025Article
- Psychosocial barriers and facilitators for cascade genetic testing in hereditary breast and ovarian cancer: a scoping review.Familial cancer · 2024Article
- Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems.Public health genomics · 2023Article
- Online Health Information Seeking Among Patients With Chronic Conditions: Integrating the Health Belief Model and Social Support Theory.Journal of medical Internet research · 2022Article
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundExperts 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.
objectiveThis 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.
methodsWe 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.
resultsData 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.
conclusionsPatients 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.
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