Abstract
BackgroundWomen carrying BRCA-mutations are facing significant challenges, including decision making regarding surveillance and risk-reducing surgery. They often report that they are left alone with these important decisions. In order to enhance the genetic counselling session we organized a group-based patient education (GPE) course for women with BRCA-mutations. The study aims were to characterize women attending a group-based patient education (GPE) course for hereditary breast and ovarian cancer, consider the usefulness of the course, evaluate symptoms of anxiety and depression among the participants, and finally investigate whether their levels of anxiety and depression changed from before to after the course session.MethodsA prospective study was conducted. Two weeks before (T1) and 2 weeks after (T2) attending the GPE-course the participants received questionnaires by mail. We collected information on demographic- and medical variables, anxiety and depression using Hospital Anxiety and Depression Scale (HADS), self-efficacy using The Bergen Genetic Counseling Self-Efficacy scale (BGCSES) and coping style using the Threatening Medical Situations Inventory (TMSI). A total of N = 100 (77% response rate) women participated at baseline and 75 (58% response rate) also completed post-course assessment.ResultsThe mean level of anxiety symptoms was elevated among participants but decreased significantly during follow-up. Lower anxiety symptom levels were associated with “longer time since disclosure of gene test result”, “higher levels of self-efficacy” and having experienced “loss of a close relative due to breast or ovarian cancer”. Lower depression symptom levels were associated with “higher levels of education” and “loss of a close relative due to breast or ovarian cancer”.ConclusionThe women in this study seemed to benefit from the GPE course. Women newly diagnosed with a BRCA mutation who reported lower levels of self-efficacy and lower levels of education were more vulnerable. These women need special attention.
Highlights
Women carrying BRCA-mutations are facing significant challenges, including decision making regarding surveillance and risk-reducing surgery
We investigated whether the group-based patient education (GPE) course was experienced as a useful intervention for these women
Study sample From October 2011 to August 2013, eight GPE courses were arranged. Both healthy women and women with a personal history of cancer were invited to participate in a course if they fulfilled the following inclusion criteria: over 18 years old, able to read Norwegian, had been to genetic counseling for hereditary breast and ovarian cancer, and were carrying a BRCA mutation
Summary
Women carrying BRCA-mutations are facing significant challenges, including decision making regarding surveillance and risk-reducing surgery. They often report that they are left alone with these important decisions. In order to enhance the genetic counselling session we organized a group-based patient education (GPE) course for women with BRCA-mutations. The study aims were to characterize women attending a group-based patient education (GPE) course for hereditary breast and ovarian cancer, consider the usefulness of the course, evaluate symptoms of anxiety and depression among the participants, and investigate whether their levels of anxiety and depression changed from before to after the course session. Beginning at age 25, women with a mutation in either of these genes are offered breast cancer surveillance, including annual mammography and breast magnetic resonance imaging (MRI). Decisions to have risk-reducing surgeries are both irreversible and existential in nature; they are associated with both psychosocial burden as well as hope for a longer and healthier life [3, 9, 10]
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