Rapid genetic counseling and testing in newly diagnosed breast cancer: Patients’ and health professionals’ attitudes, experiences, and evaluation of effects on treatment decision making
Abstract:RGCT is viewed as helpful for newly diagnosed high-risk BC patients in choosing their primary surgery and should be offered routinely by surgeons.
“…Early studies found high anxiety amongst women tested within 1 year of breast cancer diagnosis [63] and concern amongst health professionals and patients about the timing of testing [64]. However, studies investigating actual and hypothetical experiences of genetic testing shortly after diagnosis have found that, for the most part, patients and health professionals consider this type of genetic testing to be acceptable and desirable for decision-making if treatment options are improved as a result [65, 66].…”
Genetic testing of patients with cancer is increasingly offered to guide management, resulting in a growing need for oncology health professionals to communicate genetics information and facilitate informed decision-making in a short time frame. This scoping review aimed to map and synthesise what is known about health professionals’ communication about genetic testing for hereditary breast and ovarian cancer with cancer patients. Four databases were systematically searched using a recognised scoping review method. Areas and types of research were mapped and a narrative synthesis of the findings was undertaken. Twenty-nine papers from 25 studies were included. Studies were identified about (i) information needs, (ii) process and content of genetic counselling, (iii) cognitive and emotional impact, including risk perception and recall, understanding and interpretation of genetic test results, and anxiety and distress, (iv) patients’ experiences, (v) communication shortly after diagnosis and (vi) alternatives to face-to-face genetic counselling. Patients’ need for cancer-focused, personalised information is not always met by genetic counselling. Genetic counselling tends to focus on biomedical information at the expense of psychological support. For most patients, knowledge is increased and anxiety is not raised by pre-test communication. However, some patients experience anxiety and distress when results are disclosed, particularly those tested shortly after diagnosis who are unprepared or unsupported. For many patients, pre-test communication by methods other than face-to-face genetic counselling is acceptable. Research is needed to identify patients who may benefit from genetic counselling and support and to investigate communication about hereditary breast and ovarian cancer by oncology health professionals.
“…Early studies found high anxiety amongst women tested within 1 year of breast cancer diagnosis [63] and concern amongst health professionals and patients about the timing of testing [64]. However, studies investigating actual and hypothetical experiences of genetic testing shortly after diagnosis have found that, for the most part, patients and health professionals consider this type of genetic testing to be acceptable and desirable for decision-making if treatment options are improved as a result [65, 66].…”
Genetic testing of patients with cancer is increasingly offered to guide management, resulting in a growing need for oncology health professionals to communicate genetics information and facilitate informed decision-making in a short time frame. This scoping review aimed to map and synthesise what is known about health professionals’ communication about genetic testing for hereditary breast and ovarian cancer with cancer patients. Four databases were systematically searched using a recognised scoping review method. Areas and types of research were mapped and a narrative synthesis of the findings was undertaken. Twenty-nine papers from 25 studies were included. Studies were identified about (i) information needs, (ii) process and content of genetic counselling, (iii) cognitive and emotional impact, including risk perception and recall, understanding and interpretation of genetic test results, and anxiety and distress, (iv) patients’ experiences, (v) communication shortly after diagnosis and (vi) alternatives to face-to-face genetic counselling. Patients’ need for cancer-focused, personalised information is not always met by genetic counselling. Genetic counselling tends to focus on biomedical information at the expense of psychological support. For most patients, knowledge is increased and anxiety is not raised by pre-test communication. However, some patients experience anxiety and distress when results are disclosed, particularly those tested shortly after diagnosis who are unprepared or unsupported. For many patients, pre-test communication by methods other than face-to-face genetic counselling is acceptable. Research is needed to identify patients who may benefit from genetic counselling and support and to investigate communication about hereditary breast and ovarian cancer by oncology health professionals.
“…When referral does take place, it is often made after definitive surgery or with insufficient time to receive test results prior to surgery. For example, many breast surgeons report that they would not delay surgery to wait for the results of a genetic test [23 24]. Thus, while appropriate referral to genetic counseling is critical, it is also critical to provide rapid access in order to maximize the value of testing without causing treatment delay.…”
Although RGCT yielded increased genetic counseling participation, this did not result in increased rates of pre-surgical genetic testing or impact surgical decisions. These data suggest that those patients most likely to opt for genetic testing at the time of diagnosis are being effectively identified by their surgeons.
“…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 ). There is little evidence that TFGT is linked to adverse psychological effects (Høberg-Vetti et al 2016 ; Wevers et al 2015 /Wevers et al 2016 ), although studies have recommended that care should be taken to ensure that patients are treated with care and sensitivity when implementing TFGT (Augestad et al 2017 ; Shipman et al 2017 ).…”
Section: Introductionmentioning
confidence: 87%
“…Qualitative studies have focused on the information needs and experiences of ovarian cancer patients who underwent TFGT as eligibility criteria for PARP inhibitor trials (Gleeson et al 2013 ; Meiser et al 2012a ). 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.…”
This paper explores patients’ views and experiences of undergoing treatment-focused BRCA1 and BRCA2 genetic testing (TFGT), either offered following triaging to clinical genetics (breast cancer) or as part of a mainstreamed care pathway in oncology (ovarian cancer). Drawing on 26 in-depth interviews with patients with breast or ovarian cancer who had undergone TFGT, this retrospective study examines patients’ views of genetic testing at this point in their care pathway, focusing on issues, such as initial response to the offer of testing, motivations for undergoing testing, and views on care pathways. Patients were amenable to the incorporation of TFGT at an early stage in their cancer care irrespective of (any) prior anticipation of having a genetic test or family history. While patients were glad to have been offered TFGT as part of their care, some questioned the logic of the test’s timing in relation to their cancer treatment. Crucially, patients appeared unable to disentangle the treatment role of TFGT from its preventative function for self and other family members, suggesting that some may undergo TFGT to obtain information for others rather than for self.
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