Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study

Abstract

Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study. The material was condensed, and conventional qualitative analysis was used to identify patterns in the participants’ descriptions. Three core themes were identified: 1) being “beside oneself” 2) altruism and ethical dilemmas 3) the need for support and counselling to assist the decision process. The present study indicates that women who are offered genetic testing when newly diagnosed with breast or ovarian cancer want a consultation with a health professional. Personalized support and counselling might empower women to improve their ability to manage and comprehend this overwhelming situation, and find meaning in this experience.

Mainstreamed genetic testing in ovarian cancer: patient experience of the testing process

“…This study sought to evaluate the experience of patients diagnosed with high-grade non-mucinous ovarian cancer who underwent mainstreamed genetic testing at a tertiary referral center in London. Despite the potential benefits, treatment-focused genetic testing could be considered an additional burden on individuals currently facing a life-threatening diagnosis and ongoing cancer treatment 17. Participants within the current study did not appear to be adversely affected by result disclosure.…”

Evaluating empowerment in genetic counseling using patient‐reported outcomes

“…We also found that patients felt better equipped to navigate educational, financial and social resources available to and as the inclusion of genetic counselors in patient care is increasingly found to be cost-effective, 29 our study shows that this model of care is beneficial for patients in the Asian context, where patients benefit from increased empowerment following genetic counseling and testing. Genetic counseling has been found to provide patients with a better knowledge of surveillance and risk-reducing options, 30 which was subsequently reported to empower patients in their decision-making regarding genetic testing by Augestad et al 31 Notably, there were items pertaining to feelings of sadness and hopelessness in the EC domain in which no statistically significant improvement was reflected. This is similar to Tirado et al 11 who highlighted a lack of significant improvement in the emotional regula- strategies for the delivery of genetic results.…”

Patients’ Views of Treatment‐Focused Genetic Testing (TFGT): Some Lessons for the Mainstreaming of BRCA1 and BRCA2 Testing

“…Other studies have assessed patients’ information preferences when offered TFGT; trialing streamlined methods of information dissemination (Quinn et al 2016 ), comparing patients’ views of written information versus face-to-face communication (Meiser et al 2012b ), and examining timing preferences in relation to treatment decision-making (Wevers et al 2017 ). Studies, such as the Genetic Testing in Epithelial Ovarian Cancer (GTEOC) (Plaskocinska et al 2016 ), the DNA-BONus study (Høberg-Vetti et al 2016 ), and others (Augestad et al 2017 ; Meiser et al 2016 ; Wevers et al 2015 /Wevers et al 2016 ) have examined the acceptability and feasibility of TFGT among participants, in order to inform future roll-out of TFGT in clinical practice. Key findings from this research indicate that TFGT is commonly acceptable to patients who appreciate the treatment implications of timely testing (Gleeson et al 2013 ; Meiser et al 2012a /Meiser et al 2012b ; Wevers et al 2017 ).…”