Breast cancer specialists’ experiences and attitudes towards mainstream genetic testing for patients with breast cancer

doi:10.21203/rs.3.rs-2483180/v1

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Research Article

Breast cancer specialists’ experiences and attitudes towards mainstream genetic testing for patients with breast cancer

https://doi.org/10.21203/rs.3.rs-2483180/v1

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Germline genetic testing is an increasingly important component of treatment decision-making for clinicians and patients with breast cancer. To address increased demand and expedite access to genetic testing for these patients, the Parkville Familial Cancer Centre (PFCC) in Victoria, Australia, implemented a breast mainstream genetic testing program. The program educates and supports breast cancer specialists to provide eligible patients with pre-test information, gain consent, and arrange genetic testing during their routine cancer appointments.

This study aimed to explore breast cancer specialists’ experiences and opinions of the education program and of facilitating mainstream genetic testing for their patients. Specialists who had attended the mainstream genetic testing education were invited to complete an online survey about the training provided through the education program and their experience of deploying mainstream genetic testing in their practice. Descriptive statistics were compiled, and content analysis used for open text responses.

Forty-five breast cancer specialists (breast surgeons, medical oncologists, radiation oncologists and breast care nurses) responded (45% response rate). Most participants had discussed (87%) and consented (80%) patients for mainstream genetic testing. Most specialists (81%) rated their confidence levels as high or very high for consenting patients to mainstream genetic testing. The majority (89%) indicated that they believed mainstream genetic testing should be part of their role and felt well supported by the PFCC (90%).

This research demonstrates that the breast cancer specialists were satisfied by the education they received and the PFCC has successfully integrated mainstream genetic testing for breast cancer patients.

mainstreaming

breast cancer

genetic testing

oncology professionals

oncology

attitudes

The significance of a germline pathogenic variant to inform treatment and surgical decision-making for patients with breast cancer has come to the forefront in recent years [1-5]. Genetic information has a critical role in breast cancer treatment, management, and subsequent risk reduction. This role is exemplified through the use of PARP inhibitors in BRCA-associated cancer [3, 6], avoidance of radiotherapy in individuals with a germline TP53 pathogenic variant [1], and guidance regarding the extent of surgical intervention including mastectomy rather than breast conservation, contralateral risk reducing mastectomy and bilateral salpingo-oophorectomy offered as risk reducing strategies, and the latter also an adjunct for endocrine therapy [5]. Given that the efficacy of these novel breast cancer treatments depends on an individual’s germline pathogenic variant status, it is therefore important that patients diagnosed with breast cancer can access genetic testing efficiently.

Traditionally, patients with breast cancer have accessed genetic testing via a referral to a clinical genetics service as only medical specialists employed by these services could order genetic testing. This model sees patients attend two appointments pre- and post-genetic testing where they receive genetic counselling provided by genetic health professionals to support their decision-making about the testing, and disclosure of results with counselling about the personal and familial implications. However, increased demand and consequent waiting times for genetics appointments have detrimentally impacted timely access for patients with breast cancer. New models of care have been devised to facilitate access to patients whose care hinges upon the identification of germline information [7-9].

The ‘mainstream’ model, whereby a non-genetic specialist working externally to a clinical genetics service facilitates patient consent and requests genetic testing, has revolutionised access to genetic testing and has subsequently expedited this process for patients. Internationally, mainstreaming models have been successfully deployed for cancer genetic testing, where patients with ovarian cancer were the first to receive this model of care [7, 10]. More recently, patients with breast cancer have been offered mainstream genetic testing as the treatment implications of germline information have been realised [11-14], and now patients with prostate cancer are being mainstreamed [15].

The Parkville Familial Cancer Centre (PFCC) in Melbourne, Australia, established a breast cancer mainstream genetic testing program in 2017 [14]. This program facilitates mainstreaming at 10 hospitals in the State of Victoria, Australia, and breast cancer specialists at these sites can opt into this program by participating in an educational program (see Figure I). In the PFCC model, the breast cancer specialists organise genetic testing during an oncology, surgery, or radiation appointment and follow up results as part of the patients’ routine clinical care. The PFCC oversees all genetic tests ordered and the laboratory informs both the breast specialist and the PFCC of the test results when available. The treating breast cancer specialist is subsequently responsible for any treatment implications, while the PFCC provides a letter outlining test results to all patients, and for patients who receive positive results additional genetic counselling is provided and a confirmatory genetic test. Breast cancer patients with uninformative results and a significant family history of cancer are also reviewed by the PFCC and offered genetic counselling about residual cancer risks, cancer risk management, familial implications and further genetic investigations if indicated [14]. Given the shift in the patients’ clinical pathway and the role of the breast specialist, it is important to understand whether the non-genetic specialists are being appropriately trained to facilitate mainstream genetic testing and their experiences of facilitating this model of care. Therefore, the aim of this study is to examine the breast cancer specialists’ opinions of the training they received, their experiences of facilitating mainstream genetic testing for their patients and their attitudes towards the mainstream model of care.

Research design

A cross-sectional study was designed using an online survey with purpose-designed questions to examine breast cancer specialists’ experiences of the mainstream education and facilitating mainstream genetic testing.

Ethics

Ethics was approved by the Peter MacCallum Cancer Centre Human Research Ethics Committee (HREC LNR/52472/PMCC-2019, Peter Mac Project No: 19/57L).

Participants

All breast cancer specialists (medical oncologists, radiation oncologists, breast surgeons and breast care nurses, herein referred to as ‘breast cancer specialists’) who had attended a PFCC breast cancer mainstream program in-service between 2017 and 2019 were eligible to participate. Overall, a total of 105 breast cancer specialists were trained in the breast mainstream program by June 2019, at ten sites across Victoria, Australia: Peter MacCallum Cancer Centre, The Royal Melbourne Hospital, The Royal Women’s Hospital, Western Health, St Vincent’s Hospital, Box Hill Hospital, Bendigo Health, South West Healthcare (Warrnambool), and the Andrew Love Cancer Centre Geelong. Five breast cancer specialists could not be contacted and therefore were excluded from the study. One hundred breast cancer specialists eligible for recruitment included: 54 medical oncologists, 10 radiation oncologists, 29 surgeons and 7 breast care nurses.

Survey Design

Survey domains included demographic information (6 items), experience of the in-service training (5 items), experience of implementing mainstream genetic testing into their practice (17 items), and views on mainstream genetic testing (6 items). The survey primarily used close-ended questions with some open-ended questions. The survey was hosted online using REDCap at the Peter MacCallum Cancer Centre (see supplementary material) [16, 17].

Data collection

Data were collected from 24^th June 2019 until 30^th March 2020. Participants were invited via email which included a link to the online participant information, consent page and survey. Progression through the survey was dependent on respondents’ clinical experiences of mainstream genetic testing and the number of participants who completed each question is reported.

Data Analysis

Data were analysed using STATA Data Analysis and Statistical Software version 14 (StataCorp, Texas). All responses were summarised using numbers and percentages, and continuous data were analysed to produce means and standard errors of the mean. Content analysis was used where a member of the research team (author: KA) inductively coded the open text responses to identify meaningful content and group common responses.

Demographics

In total, 45 breast cancer specialists participated in the online survey (response rate 45%), from the following professional groups: 22 medical oncologists, three radiation oncologists, 16 surgeons, and four breast care nurses (Table I). Seventy-eight percent of respondents reported they had not received any formal training in genetics preceding the mainstream genetic testing program.

Table I. Participant demographics

Category	Medical Oncologist (n=22)	Radiation Oncologist (n=3)	Surgeon (n=16)	Breast Care Nurse (n=4)	Total (n=45)
Sex
Female Male Prefer not to answer	13 (59%) 9 (41%) 0 (0%)	2 (67%) 1 (33%) 0 (0%)	9 (56%) 6 (38%) 1 (6%)	4 (100%) 0 (0%) 0 (0%)	28 (62%) 16 (36%) 1 (2%)
Years in profession
< 10 years ≥10 years	13 (59%) 9 (41%)	1 (33%) 2 (67%)	6 (38%) 10 (62%)	1 (25%) 3 (75%)	21 (47%) 24 (53%)
Professional sector
Public Private	20 (91%) 2 (9%)	3 (100%) 0 (0%)	14 (87%) 2 (13%)	4 (100%) 0 (0%)	41 (91%) 4 (9%)
Location of practice
Metro Rural Both	15 (68%) 6 (27%) 1 (5%)	3 (100%) 0 (0%) 0 (0%)	15 (94%) 1 (6%) 0 (0%)	2 (50%) 2 (50%) 0 (0%)	35 (78%) 9 (20%) 1 (2%)

Experiences of the mainstreaming education

Eighty-seven percent (n=39/45) of breast cancer specialists reported the in-service provided them with the skills to discuss mainstream genetic testing and 76% (n=34/45) reported that they gained the skills to consent patients for mainstream genetic testing. All four nursing respondents indicated that the in-service did not provide them with the skills to consent patients for mainstream genetic testing but clarified with open text responses that this was because consenting patients for testing was not within their professional role.

Sixty-four percent (n=29/45) of breast cancer specialists reported that the in-service provided them with the skills to interpret mainstream genetic testing results for patients. Of those who did not feel they gained the skills to interpret a result, four of eight respondents explained using open-text that interpreting and explaining a variant of uncertain significance remained challenging after the in-service.

Overall, breast cancer specialists agreed that the in-service training had clear objectives (n=37/45; 82%), was relevant to their practice (n=37/45; 82%), was well organised (n=38/45; 84%), easy to follow (n=36/45; 80%), and the one hour allocated to training was sufficient (n=36/45; 80%).

Experiences of facilitating mainstream genetic testing

A flow chart of the study participants’ clinical experience of the mainstream program is shown in Figure II. Ninety-one percent (41/45) of breast cancer specialists had seen an eligible patient since completing the in-service. Of those 41 participants, 39 had raised the option of mainstream genetic testing with a patient. Thirty-one participants (n=31/39) had consented at least one patient for mainstream genetic testing.

Eighteen percent (7/39) of participants identified that they had seen an eligible patient but did not offer them mainstream genetic testing. Four of those 7 participants indicated that the reason for not offering testing to an eligible patient was that the “patient required a more complex discussion at an FCC appointment”, while the remaining 3 participants stated they “did not have the time required to discuss testing” with the patient.

Participants were asked to report the number of patients they had offered mainstream genetic testing to and/or had consented for mainstream genetic testing. The average number of patients from each professional group is shown in Figure III. All professional groups reported similar average numbers of patients who they had discussed mainstream genetic testing with since the program’s implementation. This was also true for the average number of patients who radiation oncologists (5, n=1), medical oncologists (5 ± 0.6 SEM, n=18) and surgeons (6 ± 1.3 SEM, n=12) had consented for mainstream genetic testing.

Eighty percent of participants reported having high (n=18/31, 58%) or very high (n=7/31, 23%) confidence levels when consenting patients for mainstream genetic testing. The frequency in which participants mentioned 13 key points to discuss during consent process is detailed in Table II.

Table II. Reported frequency that key points were discussed by breast cancer specialists’ during the consent process

When consenting a patient for mainstream genetic testing, do you discuss the following: (n=31)	Never or Rarely n (%)	Sometimes n (%)	Always n (%)
How the sample will be collected	1 (3)	3 (10)	27 (87)
The cost involved	3 (10)	9 (29)	19 (61)
That the results will be used for clinical and not research purposes	7 (23)	10 (32)	14 (45)
The mode of inheritance of hereditary breast cancer genes	4 (13)	11 (35)	16 (52)
Possible family implications	0 (0)	3 (10)	28 (90)
Privacy concerns	3 (10)	14 (45)	14 (45)
Possible insurance implications	1 (3)	8 (26)	22 (71)
The expected time until results are available	0 (0)	4 (13)	27 (87)
The types of results (no mutation, mutation, variant of unknown significance)*	0 (0)	7 (23)	24 (77)
What the different types of results mean in terms of the risk of developing another cancer	3 (10)	13 (42)	15 (48)
What the different types of results may mean for current treatment plan	1 (3)	6 (20)	24 (77)
Provide patient with a copy of the “Patient Information Sheet”	1 (3)	8 (26)	22 (71)
Discuss referring to FCC for further counselling/support	2 (6)	7 (23)	22 (71)

*Terminology used during 2017

All participants (n=29/29) personally ordered and signed the pathology request slip for their patient once they had consented to mainstream genetic testing. Ninety-seven percent of participants (n=28/29) always (n=15/29) or sometimes (n=13/29) disclosed the mainstream genetic testing results directly to their patients. Of those who did not ‘always’ deliver the results to their patient, 57% (n=8/14) nominated that the majority of the time the PFCC (genetics team) disclosed the mainstream genetic testing result. Sixty-six percent of participants (n=19/29) had at least one patient who had received a positive mainstream genetic testing result. Of these 19 participants, 16 indicated that the positive result altered their patient’s breast cancer treatment plan.

Opinions of mainstream genetic testing

Eighty-nine percent of participants (n=40/45) believe that breast mainstream genetic testing should be part of their practice. Ninety percent of breast cancer specialists (n=26/29) felt they had been well supported by the PFCC mainstream program. Eighty percent of breast cancer specialists (n=31/39) did not believe that there was one medical specialist with cancer genetics experience in their clinic who saw a majority of the patients who were eligible for mainstream genetic testing.

Participants indicated that the greatest advantage of mainstream genetic testing was the streamlined process and the rapid turnaround time (see Table III). Notably, 40% of participants perceived “no disadvantages” of the mainstream genetic testing program.

Table III. Breast cancer specialists’ perceived advantages and disadvantages of the mainstream genetic testing program (n=30)

In the open text comments at the conclusion of the survey, 46% of participants (n=19/41) took the opportunity to suggest improvements to the mainstream genetic testing program or provided comments. Three areas were identified, (1) improvements in communication to oncology teams, (2) improvements in mainstream genetic testing processes, and (3) clarification of the mainstream genetic testing processes (see Table IV). A high level of praise for the mainstream genetic testing program was also identified. A Medical Oncologist wrote, “very happy with the program. Glad to be able to offer testing to my patients”.

Table IV. Areas of improvement for the mainstream program suggested by respondents

Common areas for suggested improvements of mainstream genetic testing program	Example of response
Improvements in communication to oncology teams	Surgeon #2: “Communication e.g., email, to tell us (requesting doctor) that a sample has been collected and genetic testing is occurring and the expected date of the result.”
Improvements in mainstream genetic testing processes	Surgeon #10: “Medicare funding only offered for one set of testing. Therefore I’m reticent to muck up initial panel.”
Clarification of the mainstream genetic testing processes	Surgeon #7: “I am not clear whether the FCC will be involved in counselling patients about their results, whether positive or non-informative. Will they only be involved with a positive result?”

This study examined the PFCC breast cancer mainstream program from the perspective of the non-genetic breast cancer specialists trained to deliver mainstream genetic testing. Overall, the breast cancer mainstream program was positively received by the breast cancer specialists, which suggests a successful integration of genetic testing into routine breast oncology care in Victoria, Australia. Other clinical services who have implemented mainstreaming programs for genetic testing for breast cancer [11, 13, 18] and ovarian cancer [7, 8, 19], have also reported a high level of clinician support and satisfaction.

Training

Breast cancer specialists attended a mandatory in-service to upskill in the facilitation of genetic testing for their patients with breast cancer through the PFCC mainstream program. The majority of participants in this study held positive views of the breast mainstream in-service and reported that the training provided them with the skills to discuss (87%), consent (76%) and interpret a genetic test result (64%). Gleeson and colleagues recently reported a similar training method used to upskill Australasian non-genetic cancer specialists to offer BRCA1/2 testing to women with ovarian cancer [20]. Post-training survey results demonstrated that this training method was successful in increasing clinicians’ genetic knowledge, communication skills and willingness to embrace mainstreaming, which the authors concluded were critical in the successful integration of genetic testing within cancer clinics [20].

Concerns about new oncology staff commencing work at the mainstream hospital sites, who had not attended the in-service, was raised by the PFCC program [14]. This suggests that annual up-skilling in-services or uploading recorded sessions online may be necessary to ensure all practicing clinicians have attended appropriate training [14, 21]. Similar mainstreaming programs reported by the Royal Marsden Hospital, UK, and by Sorbonne University Cancer Genetics, France, have utilised pre-recorded on-line training modules to upskill non-genetic cancer specialists [7, 18, 19]. Clinicians involved in each program reported a high level of satisfaction with the flexible training method, which was accessible at their own convenience and felt well-informed by the training videos [18, 19]. In the future, perhaps using a combination of face-to-face in-services with innovative on-line training modules will ensure that breast cancer specialists are regularly up skilled at the PFCC.

Previous studies have reported cancer clinicians have insufficient genetics knowledge and expressed educational needs when it comes to discussing cancer genetics within their consults [19]. Whilst some breast cancer specialists reported concern around their ability to interpret test results that included variants of uncertain significance (VUS) after attending the in-service training, after rollout the PFCC refined the program to ensure more support around interpretation was offered to mainstream clinicians when a VUS result was reported [14]. The majority of breast cancer specialists in this study self-assessed their confidence levels for consenting patients for mainstream genetic testing as high or above. This finding is consistent with other studies from similar mainstreaming programs [8, 13, 19, 21]. The confidence did not seem to be dependent on the breast cancer specialists’ previous genetics training, as 78% of the participants reportedly had no formal genetics training preceding the mainstream genetic testing program. It is possible that the specialists’ confidence to consent patients could be attributed to the in-service training that they received.

In essence, the reported overall positive experiences suggests that the training method utilised in the PFCC mainstream program is acceptable and sufficient to support non-genetic breast cancer specialists to incorporate mainstream genetic testing into their practices. Nevertheless, the suggestions for improvement to the PFCC mainstream program offered by the breast specialists could be incorporated into the training program. Specifically, clarifying and delineating the distinct roles of the PFCC as a clinical genetics service and that of the molecular genetics laboratory could encourage breast specialists to contact the laboratory directly to determine turnaround times for test results and encourage a relationship directly between these service providers.

Clinical experience

Previous mainstream studies suggest that having ‘mainstream champions’ can be a key factor in ensuring mainstream program success. Mainstream champions are non-genetics health professionals practicing in the oncology setting who advocate for genetic testing, and so can facilitate and support the change to practice within the oncology team [14, 22, 23]. The PFCC operates within a tertiary referral centre and has multiple breast specialists who have dual roles within both oncology teams and the PFCC, and thus have been acting in a mainstream champion role since the introduction of the program. This is supported by participants’ comments in the free-text responses suggesting that there are strong advocates for breast mainstream genetic testing associated with the PFCC mainstream program, ultimately resulting in the program’s successful integration into standard care pathways.

To our knowledge this is the first study that has investigated how frequently key information is discussed during the mainstreaming consent process, as reported by the clinicians. Reassuringly many of the key points, such as treatment implications, family implications and insurance implications were reportedly ‘always’ discussed by 70% or more of the breast cancer specialists when consenting their patients for mainstream genetic testing. A study by Colombo and colleagues evaluated the patient experience of a streamlined oncology-led BRCA1/2 testing pathway in America and Europe [19]. Patients assessed the ‘quality’ of pre-test counselling they received from the oncology team, by reporting if their oncologist or nurse discussed 13 elements during the consent process [19]. Ninety-nine percent of patients were satisfied with the pre-test counselling, with over ninety percent of patients reporting that each of the 13 elements were discussed. The discussions in a mainstreaming context will not be as comprehensive as during a genetics consultation, but evidence from previous studies shows that this is adequate and preferential to patients during a treatment-focused test [24–26]. Importantly in the current study, 94% of breast cancer specialists discussed referring their patient to a genetic service if they wished for a more detailed discussion or psychosocial support. Initial reports from the PFCC mainstreaming program indicate that patient satisfaction is also high [14], however, a more comprehensive study is warranted to fully gauge the patient experience.

Opinions of mainstream genetic testing

Most breast cancer specialists (89%) believed that mainstream genetic testing should be part of their practice, which demonstrates strong support for the PFCC mainstream program. The identified advantages and challenges of the PFCC mainstream program in this study, closely aligned with previously published studies [7, 8, 12, 27]. Participants nominated several advantages of the breast mainstream program, which included, the streamlined process for patients to access genetic testing, rapid results and collaborating professionally with the genetic service.

The major disadvantage of breast mainstream genetic testing identified in this study was the increase in workload for breast cancer specialists as compared with standard care. Several studies also identified the increased time as a disadvantage of mainstreaming [8, 28–30]. Although the time required was identified as a disadvantage, this does not appear to have deterred the breast cancer specialists, as most reported that they still believed mainstreaming should be part of their role. As the breast cancer specialists’ experience and confidence increases, perhaps the time required to discuss genetic information and testing in standard cancer care will diminish, with more streamlined conversations able to take place [31].

Study limitations

A limitation of this study was that experience of the mainstream program including confidence levels, how many patients clinicians had consented to testing and what was included in the genetic testing consent discussion was all self-reported, and unable to be verified. This study may also be limited by a response bias, which could influence the results. The breast cancer specialists who have had positive experiences implementing mainstream genetic testing into their practice and who perceived mainstream genetic testing to be important, may have been more likely to respond to the survey. This may have resulted in a more positive representation than the true experience among all breast cancer specialists. This could also have been exacerbated by the study response rate, and for these reasons, the opinions and attitudes voiced in this study may not be generalizable to the wider community of cancer specialists.

The data generated from this study suggests that the PFCC has successfully integrated mainstream genetic testing for patients with breast cancer into multiple hospital sites in Victoria. The breast cancer specialists were highly supportive of this model of care, satisfied with the training they received, successfully facilitated testing for their patients and felt positively about integrating testing into their practices. Further improvements with communication between the genetics laboratory and oncology teams will enhance the program’s future progress. Investigation into the patient experience will be a necessary step in the evaluation of the PFCC mainstream program.

Acknowledgements

We thank all the participating breast cancer specialists who shared their experiences of the program, provided important feedback and suggestions to help improve the service. Our thanks also to all the mainstream breast cancer specialists and genetics team who were involved and support the breast mainstream program.

Compliance with ethical standards

Informed consent

Participants provided consent before completion of the online survey.

Disclosure

The authors declare they hold no conflict of interest with respect to this work.

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No competing interests reported.

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Breast cancer specialists’ experiences and attitudes towards mainstream genetic testing for patients with breast cancer

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Abstract

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Introduction

Methods

Research design

Ethics

Participants

Survey Design

Data collection

Data Analysis

Results

Demographics

Experiences of the mainstreaming education

Experiences of facilitating mainstream genetic testing

Opinions of mainstream genetic testing

Discussion

Conclusion

Declarations

References

Additional Declarations

Supplementary Files

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