Eligible participants were approached in clinic or responded to an email advertisement within the Minnesota Ovarian Cancer Alliance newsletter. Eligibility criteria included: > 18 years old, ability to understand and speak English, voluntary written informed consent before study entry, and no known major psychiatric or neurological diagnosis. Women with a diagnosis of epithelial ovarian, primary peritoneal or fallopian tube cancer were recruited from the Gynecologic Cancer Clinic at the University of Minnesota-Fairview Medical Center and a local non-profit organization, the Minnesota Ovarian Cancer Alliance. The study was approved by the University of Minnesota Institutional Review Board (1402 M47824). As an initial step, the objective of this study was, through the use of focus groups, to identify barriers to and motivators for receipt of genetic counseling along with preferences regarding potential use of a mobile application to address this need. The goal of the mobile intervention is to educate patients on the purpose of genetic counseling related to their disease, address barriers to genetic counseling, and provide motivators and triggers to make an appointment. Given the necessity to increase uptake of cancer genetic counseling in ovarian cancer patients, as well as the potential utility of a mobile application to improve adherence to medical recommendations, we plan to design a mobile intervention to encourage genetic counseling utilization in this population. While web-based cancer risk assessment tools are available, mobile health intervention directed at increasing use of cancer genetic services has not been widely reported although there are some preliminary data on mobile phone messaging use in the prenatal genetic testing setting. There is a clear need for evidence-based interventions for cancer survivors to increase uptake of genetic counseling services. Reported barriers include fear of insurance discrimination, cost, emotional distress, unknown benefit, time commitment, lack of knowledge about genetic counseling or testing, discouragement of family members, and personal fear. Even when referred, not all at-risk patients pursue recommended genetic counseling. In previous research, we reported that only 19% of epithelial ovarian cancer patients were referred for genetic counseling despite the NCCN recommendations and similar rates have been reported in other studies. Given the complexity of hereditary cancer syndromes, errors in medical management, and that genetic testing is often conducted without appropriate genetic counseling, guidelines recommend genetic counseling prior to testing. Therefore, genetic counseling is recommended for all ovarian cancer patients by both the National Comprehensive Cancer Network (NCCN) and Society of Gynecologic Oncology (SGO) since up to 20% of ovarian cancers are due to hereditary cancer syndromes and effective cancer screening and prevention options exist for at-risk family members. Research suggests genetic testing be considered for all individuals with invasive ovarian cancer, high-grade epithelial tumors, or any serous tumor. Nearly 1 out of 5 of ovarian cancers is due to hereditary cancer syndromes including hereditary breast and ovarian cancer syndrome, as a result of BRCA1 and BRCA2 gene mutations, and Lynch syndrome. Ovarian cancer is the deadliest gynecologic cancer, ranking fifth in cancer deaths among women. Participants were supportive of the use of mobile technology for promoting uptake of genetic counseling. These data reiterate previously reported barriers to genetic counseling as observed in other populations. Six major themes regarding barriers to and motivators of genetic counseling and use of mobile technology in promoting genetic counseling emerged: (1) need for information, (2) relevance, (3) emotional concerns, (4) family concerns, (5) practical concerns, and (6) mobile application considerations. Transcripts were analyzed using standard procedures of qualitative thematic text analysis and descriptive coding techniques. Topics included understanding of genetic counseling, perceived pros and cons, preferences for receiving health information, and familiarity with mobile phone technology. Three focus groups were conducted including 14 women with a diagnosis of epithelial ovarian, primary peritoneal or fallopian tube cancer. The goal of this study was to identify barriers to and motivators for receipt of genetic counseling along with preferences regarding potential use of a mobile application to promote genetic counseling. Despite these recommendations, uptake of genetic counselling and testing is low. National guidelines recommend genetic counseling for all ovarian cancer patients because up to 20% of ovarian cancers are thought to be due to hereditary cancer syndromes and effective cancer screening and prevention options exist for at-risk family members.
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