A qualitative study of barriers to genetic counseling and potential for mobile technology education among women with ovarian cancer

Abstract

BackgroundNational 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. Despite these recommendations, uptake of genetic counselling and testing is low. 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.MethodsThree focus groups were conducted including 14 women with a diagnosis of epithelial ovarian, primary peritoneal or fallopian tube cancer. Topics included understanding of genetic counseling, perceived pros and cons, preferences for receiving health information, and familiarity with mobile phone technology. Transcripts were analyzed using standard procedures of qualitative thematic text analysis and descriptive coding techniques.ResultsSix 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.ConclusionsThese data reiterate previously reported barriers to genetic counseling as observed in other populations. Participants were supportive of the use of mobile technology for promoting uptake of genetic counseling.

Year 1: Experiences of a tertiary cancer centre following implementation of reflex BRCA1 and BRCA2 tumor testing for all high-grade serous ovarian cancers in a universal healthcare system

“…This is consistent with published literature of ovarian cancer patients [30,[36][37][38]. Perceived lack of relevance has been cited as a barrier in patient attendance for genetic counseling [39]; however, it is unclear whether patients were aware of their tumor results prior to attending genetic counseling. Further studies are required to evaluate the patient impact of reflex BRCA1/2 tumor testing and whether knowledge of tumor results will alter patient uptake of germline services.…”

Genetic counseling of patients with ovarian carcinoma: acceptance, timing, and psychological wellbeing

“…In women with EOC, reasons to decline genetic counseling were the absence of relatives for whom genetic counseling would be relevant, being too ill to come to the hospital or being not willing to come to the hospital (Dekker et al 2013;Pal et al 2005). Emotional concerns, such as being afraid of the test result and worrying family members, did not emerge as relevant in these latter studies but were mentioned in focus groups by patients with breast cancer and EOC (Kne et al 2017;Vogel et al 2018). In the present study, the women also mentioned emotional reasons.…”

“…However, it is possible that the women had forgotten that they had received information about genetic counseling from the gynecologist or another referring clinician. This issue has been reported earlier (Vogel et al 2018). Also, the referring clinician may not have spent sufficient time on the subject or the women may have forgotten the information due to the high impact of the diagnosis and/or treatment of EOC.…”

“…For example, patients who have no children might have other family members at risk for (ovarian) cancer or the patients mentioning a small chance of a hereditary cause might underestimate their risk. Indeed, it has been shown that cancer patients may have a lack of knowledge regarding genetics (Dekker et al 2013;Geer et al 2001;Vogel et al 2018). Therefore, it is important that the referring physician thoroughly explores a woman's reasons for declining genetic counseling.…”

Germline Mutations in Other Homologous Recombination Repair-Related Genes Than BRCA1/2: Predictive or Prognostic Factors?

“…There are potential barriers to gHRR testing and genetic counseling for eligible women with or without a diagnosis of breast cancer: lack of understanding and knowledge about genetic counseling and testing by physicians and patients; lack of perceived benefits of counseling; lack of perceived risk of having a mutation; cost of testing; and fear of insurance discrimination [ 47 , 48 , 49 , 50 ]. Patients’ attitudes to gHRR testing (the predisposing factor), income (the enabling factor), and risk of carrying a mutation (the need factor) predict uptake of testing [ 51 ].…”