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Rapid genetic counseling and testing in newly diagnosed breast cancerSurgical and psychosocial implicationsWevers, M.R.

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Citation for published version (APA):Wevers, M. R. (2018). Rapid genetic counseling and testing in newly diagnosed breast cancer: Surgical andpsychosocial implications.

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MR Wevers, NK Aaronson, EMA Bleiker, DEE Hahn, T Brouwer, T van Dalen, EB Theunissen, B van Ooijen, MA de Roos, PJ Borgstein, BC Vrouenraets, E Vriens, WH Bouma, H Rijna, JP Vente, MA Kuenen, J van der Sanden-Melis, AJ Witkamp, EJTh Rutgers, S Verhoef, MGEM Ausems

Published in Journal of Surgical Oncology 2017 Dec;116(8):1029-1039

Rapid genetic counseling and testing in newly

diagnosed breast cancer: Patients’ and health

professionals’ attitudes, experiences, and evaluation

of effects on treatment decision making

MR Wevers, NK Aaronson, EMA Bleiker, DEE Hahn, T Brouwer, T van Dalen, EB Theunissen, B van Ooijen, MA de Roos, PJ Borgstein, BC Vrouenraets, E Vriens, WH Bouma, H Rijna, JP Vente, MA Kuenen, J van der Sanden-Melis, AJ Witkamp, EJTh Rutgers, S Verhoef, MGEM Ausems

Published in Journal of Surgical Oncology 2017 Dec;116(8):1029-1039

Rapid genetic counseling and testing in newly

diagnosed breast cancer: Patients’ and health

professionals’ attitudes, experiences, and evaluation

of effects on treatment decision making

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124

Abstract

Background Rapid genetic counseling and testing (RGCT) in newly diagnosed high-risk breast cancer (BC) patients may influence surgical treatment decisions. To successfully integrate RGCT in practice, knowledge of professionals’ and patients’ attitudes towards RGCT is essential.

MethodsBetween 2008 and 2010, we performed a randomized clinical trial evaluating the impact of RGCT. Attitudes towards and experience with RGCT were assessed in 265 patients (at diagnosis, 6- and 12-month follow-up) and 29 medical professionals (before and after the recruitment period).

ResultsAt 6-month follow-up, more patients who had been offered RGCT felt they had been actively involved in treatment decision-making than patients who had been offered usual care (67% versus 48%, p=0.06). Patients who received DNA-test results before primary surgery reported more often that RGCT influenced treatment decisions than those who received results afterwards (p<0.01). 87% felt that genetic counseling and testing should preferably take place between diagnosis and surgery. Most professionals (72%) agreed that RGCT should be routinely offered to eligible patients. Most patients (74%) and pro-fessionals (85%) considered surgeons the most appropriate source for referral.

ConclusionsRGCT is viewed as helpful for newly diagnosed high-risk BC patients in choosing their primary surgery and should be offered routinely by surgeons.

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124

Abstract

Background Rapid genetic counseling and testing (RGCT) in newly diagnosed high-risk breast cancer (BC) patients may influence surgical treatment decisions. To successfully integrate RGCT in practice, knowledge of professionals’ and patients’ attitudes towards RGCT is essential.

MethodsBetween 2008 and 2010, we performed a randomized clinical trial evaluating the impact of RGCT. Attitudes towards and experience with RGCT were assessed in 265 patients (at diagnosis, 6- and 12-month follow-up) and 29 medical professionals (before and after the recruitment period).

ResultsAt 6-month follow-up, more patients who had been offered RGCT felt they had been actively involved in treatment decision-making than patients who had been offered usual care (67% versus 48%, p=0.06). Patients who received DNA-test results before primary surgery reported more often that RGCT influenced treatment decisions than those who received results afterwards (p<0.01). 87% felt that genetic counseling and testing should preferably take place between diagnosis and surgery. Most professionals (72%) agreed that RGCT should be routinely offered to eligible patients. Most patients (74%) and pro-fessionals (85%) considered surgeons the most appropriate source for referral.

ConclusionsRGCT is viewed as helpful for newly diagnosed high-risk BC patients in choosing their primary surgery and should be offered routinely by surgeons.

Patients’ and health professionals’ attitudes and experiences

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Introduction

Traditionally, genetic counseling and testing (GCT) in breast cancer (BC) patients at risk of carrying a mutation in a cancer predisposition gene is offered after completion of (primary) treatment [1]. However, it is increasingly acknowledged that rapid genetic counseling and testing (RGCT), i.e. in the period between BC diagnosis and primary surgery, may be ben-eficial for both patients and surgeons [2-5].

Breast cancer patients who receive a positive DNA test result (i.e. carry a BRCA1/2 gene mutation) are at increased risk of developing a second primary breast cancer and/or ovar-ian cancer, and may incorporate the knowledge of their genetic status into their decisions on primary treatment. Therefore, some authors have labeled RGCT as “treatment-focused genetic testing” [2,6,7]. Results of our randomized clinical trial (RCT) on the impact of RGCT indicate that RGCT in newly diagnosed, high-risk breast cancer patients indeed influences surgical treatment decisions when the DNA test result is made available before primary surgery. Patients within the RGCT group who actually received their DNA test results before primary surgery had a direct bilateral mastectomy significantly more often than patients who received usual care (22% versus 9.2%, p=0.03) [8]. RGCT did not have any measurable adverse psychosocial effects [9].

To implement RGCT successfully in routine multidisciplinary breast cancer care, it is important to know the attitudes of both patients and health professionals towards RGCT. To our knowledge, only one small study has assessed attitudes of a sample of patients who actually had received RGCT (n=14), indicating a positive attitude towards the procedure [6]. Another study by the same research group reported on the experiences of oncology professionals involved in a trial comparing different models of delivering information about RGCT to younger newly diagnosed BC patients [7]. The majority of professionals had pri-marily positive experiences with providing RGCT [5].

As part of our RCT on the impact of RGCT, both patients and health professionals (sur-geons and specialized nurses) were asked about their attitudes towards and experiences with RGCT both before and after the recruitment period.

Our main research questions for this part of the study were: 1) Does RGCT increase patients’ sense of empowerment in making decisions on primary surgery? 2) How does RGCT influence the amount of time spent on discussing treatment options, risk-reduc-ing surgery and/or options for reconstruction? 3) What type of professional is the most suitable to refer patients for RGCT and at what point in time after BC diagnosis should eligible patients be referred? and 4) Should RGCT be offered routinely to newly diagnosed high-risk breast cancer patients?


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Introduction

Traditionally, genetic counseling and testing (GCT) in breast cancer (BC) patients at risk of carrying a mutation in a cancer predisposition gene is offered after completion of (primary) treatment [1]. However, it is increasingly acknowledged that rapid genetic counseling and testing (RGCT), i.e. in the period between BC diagnosis and primary surgery, may be ben-eficial for both patients and surgeons [2-5].

Breast cancer patients who receive a positive DNA test result (i.e. carry a BRCA1/2 gene mutation) are at increased risk of developing a second primary breast cancer and/or ovar-ian cancer, and may incorporate the knowledge of their genetic status into their decisions on primary treatment. Therefore, some authors have labeled RGCT as “treatment-focused genetic testing” [2,6,7]. Results of our randomized clinical trial (RCT) on the impact of RGCT indicate that RGCT in newly diagnosed, high-risk breast cancer patients indeed influences surgical treatment decisions when the DNA test result is made available before primary surgery. Patients within the RGCT group who actually received their DNA test results before primary surgery had a direct bilateral mastectomy significantly more often than patients who received usual care (22% versus 9.2%, p=0.03) [8]. RGCT did not have any measurable adverse psychosocial effects [9].

To implement RGCT successfully in routine multidisciplinary breast cancer care, it is important to know the attitudes of both patients and health professionals towards RGCT. To our knowledge, only one small study has assessed attitudes of a sample of patients who actually had received RGCT (n=14), indicating a positive attitude towards the procedure [6]. Another study by the same research group reported on the experiences of oncology professionals involved in a trial comparing different models of delivering information about RGCT to younger newly diagnosed BC patients [7]. The majority of professionals had pri-marily positive experiences with providing RGCT [5].

As part of our RCT on the impact of RGCT, both patients and health professionals (sur-geons and specialized nurses) were asked about their attitudes towards and experiences with RGCT both before and after the recruitment period.

Our main research questions for this part of the study were: 1) Does RGCT increase patients’ sense of empowerment in making decisions on primary surgery? 2) How does RGCT influence the amount of time spent on discussing treatment options, risk-reduc-ing surgery and/or options for reconstruction? 3) What type of professional is the most suitable to refer patients for RGCT and at what point in time after BC diagnosis should eligible patients be referred? and 4) Should RGCT be offered routinely to newly diagnosed high-risk breast cancer patients?

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Materials and Methods

This study was performed as part of an RCT on the behavioral and psychosocial impact of RGCT in newly diagnosed breast cancer patients [4,8,9]. We analyzed data from both the participating patients and their treating surgeons and specialized nurses (i.e., ‘health professionals’).

Details of the RCT are available elsewhere [4,8,9]. Briefly, between November 2008 and December 2010, newly diagnosed breast cancer patients were recruited from 12 hospitals in the Netherlands by their surgeons or specialized nurses. Two-thirds of the patients were allocated to the intervention group that was invited to undergo RGCT, and one-third to a usual care (UC) control group. The RGCT group was offered an appointment with a clinical geneticist within 5 working days after recruitment, and given the opportunity to undergo rapid DNA testing, with test results available within 4 weeks. Women in the UC group could be referred to a clinical geneticist by their treating physician, which was most typically after completion of primary treatment.

PatientsTrial participants were women newly diagnosed with breast cancer, with a risk of at least 10% of carrying a BRCA1/2 gene mutation [10,11]. Women were excluded if they were below 18 years of age, had already undergone surgical treatment for this breast cancer, were not able to read or write in Dutch, or already had undergone genetic counseling and testing.

ProfessionalsHealth professionals were BC surgeons and specialized BC nurses working in the 12 hospi-tals that took part in the trial. They recruited and treated patients in both the RGCT and the UC groups. We included specialized BC nurses because, in many Dutch hospitals, they play a significant role in physically examining new patients, providing support, and discussing therapy plans. Results are reported only for those professionals who completed both the baseline and follow-up questionnaires in order to assess possible changes in attitudes toward RGCT as a result of having had experience with it. Results for the surgeons and nurses are reported together, except where separate reporting was deemed appropriate or where the results clearly differed between professional groups.

Study design and data collectionAll patients were asked to complete questionnaires at baseline (prior to randomization) and at 6-month and 12-month follow-up. The questionnaires assessed sociodemograph-ics, preferences for type of primary surgery, questions on decision-making, and attitudes

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126

Materials and Methods

This study was performed as part of an RCT on the behavioral and psychosocial impact of RGCT in newly diagnosed breast cancer patients [4,8,9]. We analyzed data from both the participating patients and their treating surgeons and specialized nurses (i.e., ‘health professionals’).

Details of the RCT are available elsewhere [4,8,9]. Briefly, between November 2008 and December 2010, newly diagnosed breast cancer patients were recruited from 12 hospitals in the Netherlands by their surgeons or specialized nurses. Two-thirds of the patients were allocated to the intervention group that was invited to undergo RGCT, and one-third to a usual care (UC) control group. The RGCT group was offered an appointment with a clinical geneticist within 5 working days after recruitment, and given the opportunity to undergo rapid DNA testing, with test results available within 4 weeks. Women in the UC group could be referred to a clinical geneticist by their treating physician, which was most typically after completion of primary treatment.

PatientsTrial participants were women newly diagnosed with breast cancer, with a risk of at least 10% of carrying a BRCA1/2 gene mutation [10,11]. Women were excluded if they were below 18 years of age, had already undergone surgical treatment for this breast cancer, were not able to read or write in Dutch, or already had undergone genetic counseling and testing.

ProfessionalsHealth professionals were BC surgeons and specialized BC nurses working in the 12 hospi-tals that took part in the trial. They recruited and treated patients in both the RGCT and the UC groups. We included specialized BC nurses because, in many Dutch hospitals, they play a significant role in physically examining new patients, providing support, and discussing therapy plans. Results are reported only for those professionals who completed both the baseline and follow-up questionnaires in order to assess possible changes in attitudes toward RGCT as a result of having had experience with it. Results for the surgeons and nurses are reported together, except where separate reporting was deemed appropriate or where the results clearly differed between professional groups.

Study design and data collectionAll patients were asked to complete questionnaires at baseline (prior to randomization) and at 6-month and 12-month follow-up. The questionnaires assessed sociodemograph-ics, preferences for type of primary surgery, questions on decision-making, and attitudes


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towards and experiences with RGCT. To address our research question about patients’ sense of empowerment in making decisions on primary surgery, patients in both study arms were asked about their preferences for (at baseline) and experiences with (at fol-low-up) involvement in treatment decision-making. Towards this end, patients allocated to the RGCT group were also queried about their experiences with and attitudes towards RGCT at follow-up, and which factors most influenced their decision making. All profes-sionals were asked for their experiences with and attitudes towards RGCT at baseline and at time of study completion. The questions posed to the patients and health professionals are described in more detail in Table 1. Clinical data were abstracted from the medical records.

A subset of the patients was interviewed by telephone after completing their 12-month follow-up. This subgroup included both women who accepted and women who declined RGCT, and both women who were found to carry a BRCA gene mutation and those with a negative or non-informative test result. Patients were selected purposively from all partic-ipating hospitals in order to include women with a broad spectrum of attitudes towards and experiences with RGCT.

Statistical analysesDescriptive statistics were used to characterize the patient and professional samples. We used mixed logistic regression models to evaluate group differences in the extent to which patients reported being involved in the decision on primary surgery, and whether RGCT influenced their treatment decisions. For the former regression model, patients in both study arms (RGCT versus UC) were compared, and laterality of BC diagnosis was used as a covariate because of a significant baseline difference on this variable between groups. For the latter regression model, patients in the RGCT group who received their DNA test result before primary surgery were compared with patients in the RGCT group who did not receive the test result before primary surgery. For this analysis, age and education were used as covariates because of significant differences between groups on these variables. The models included random effects for the intercept and the stratification variable (hos-pital) to account for homogeneity between subjects within strata. For all other analyses, descriptive statistics were used. Due to small sample sizes, we did not use statistical tests to compare surgeons and specialized nurses. All p-values were set at 0.05. The number of cases varies slightly per analysis due to missing values.


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towards and experiences with RGCT. To address our research question about patients’ sense of empowerment in making decisions on primary surgery, patients in both study arms were asked about their preferences for (at baseline) and experiences with (at fol-low-up) involvement in treatment decision-making. Towards this end, patients allocated to the RGCT group were also queried about their experiences with and attitudes towards RGCT at follow-up, and which factors most influenced their decision making. All profes-sionals were asked for their experiences with and attitudes towards RGCT at baseline and at time of study completion. The questions posed to the patients and health professionals are described in more detail in Table 1. Clinical data were abstracted from the medical records.

A subset of the patients was interviewed by telephone after completing their 12-month follow-up. This subgroup included both women who accepted and women who declined RGCT, and both women who were found to carry a BRCA gene mutation and those with a negative or non-informative test result. Patients were selected purposively from all partic-ipating hospitals in order to include women with a broad spectrum of attitudes towards and experiences with RGCT.

Statistical analysesDescriptive statistics were used to characterize the patient and professional samples. We used mixed logistic regression models to evaluate group differences in the extent to which patients reported being involved in the decision on primary surgery, and whether RGCT influenced their treatment decisions. For the former regression model, patients in both study arms (RGCT versus UC) were compared, and laterality of BC diagnosis was used as a covariate because of a significant baseline difference on this variable between groups. For the latter regression model, patients in the RGCT group who received their DNA test result before primary surgery were compared with patients in the RGCT group who did not receive the test result before primary surgery. For this analysis, age and education were used as covariates because of significant differences between groups on these variables. The models included random effects for the intercept and the stratification variable (hos-pital) to account for homogeneity between subjects within strata. For all other analyses, descriptive statistics were used. Due to small sample sizes, we did not use statistical tests to compare surgeons and specialized nurses. All p-values were set at 0.05. The number of cases varies slightly per analysis due to missing values.

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Table 1. Experiences and attitudes regarding RGCT that were assessed in patients and professionalsOutcome variables Patients or

professionalsNumber of items (scoring) Timing of assessment Description of question(s)

Who do you prefer to decide on type of primary surgery?

Who decided on type of primary surgery?

Patients 1 item, 5 possible answers: • surgeon / mainly surgeon, incorporating patient’s

opinion (grouped together)• surgeon and patient together • mainly patient, incorporating surgeon’s opinion /

patient (grouped together)

Baseline

At 6 and 12 months follow-up

Factors that mostly influenced therapy decisions

Patients(only RGCT arm)

1 item, a maximum of 3 possible answers from:• surgeon’s advice• results of genetic counseling and testing• conserving breast(s)• reconstruction possibilities• family experiences• wish to have (more) children• future breast feeding• partner’s opinion• other BC patients’ experiences


“Which factors mostly influenced your decision for BC treatment?”

Influence of RGCT on BC treatment Patient (only RGCT arm)

1 item (4 point scale, not at all to very much) At 6 and 12 months follow-up

‘‘How much influence did genetic counseling and testing have on the choice of breast cancer treatment?”

Professionals 3 items (5 point scale, never to always) After the recruitment period had ended

“How often another type of primary surgery was performed because of RGCT?”“How often primary surgery was performed before the DNA test results were available?”“How often primary surgery was delayed in order to wait for DNA test results?”

Time spent with patients who were offered RGCT, as compared to patients who received usual care

Professionals 4 items (5 point scale, much more to much less) After the recruitment period had ended

“As compared to other patients, in patients who were allocated to the RGCT group, how much time did you spend on:• Discussing treatment options• Decisional process• Discussing options for risk-reducing surgery• Discussing options for reconstruction?”

Satisfaction with aspects of RGCT and decisional process

Patients 3 items (5 point scale, very satisfied to very unsatisfied)


“How satisfied were you with:• The fact that RGCT was offered?• The extent to which patients could decide on their treatment?• The time it took before DNA test results were available”

Preferences concerning timing of referral for

Patients and professionals

1 item, 4 possible answers:• Shortly after diagnosis, before primary surgery• After (primary) surgery• After adjuvant treatment• Otherwise, namely….

At 6 months follow-up (patients)After the recruitment period had ended (professionals)

“When is the best moment to refer eligible breast cancer patients for RGCT?”

Preferences concerning physician referring for RGCT


1 item, 5 possible answers:• Surgeon• Reconstructive / plastic surgeon• General practitioner• Medical oncologist• Radiotherapist


“Which physician would be the most suitable to refer for RGCT?”

Attitudes towards RGCT in newly diagnosed breast cancer patients

Patients 1 item (yes, no, don’t know) At 6 months follow-up “Would you advice newly diagnosed breast cancer patients to undergo RGCT, if they were eligible?”

Professionals 5 items (5 point scale, totally disagree to totally agree)

Before and after the recruitment period

“I consider the possibility of referral for RGCT as important”“I consider RGCT as burdensome for the patient ““The advantages of RGCT outweigh the disadvantages for the professional”“The advantages of RGCT outweigh the disadvantages for the patient”“RGCT should be offered routinely to eligible newly diagnosed breast cancer patients”

*All questions were self-developed

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Baseline




































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Baseline




































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Baseline



































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Results

PatientsIn total, 265 newly diagnosed high-risk BC patients were recruited into the trial, of whom 178 were allocated to the RGCT group and 87 to the UC group. All baseline questionnaires were completed. At 6 month follow-up, 245 (92%) questionnaires were returned, and at 12 month follow-up, 240 (91%). Sociodemographic and medical characteristics of the sample are shown in Table 2.

Experiences with RGCT and its effect on the decisional processAt baseline, there were no significant differences between the RGCT and the UC group in preferences for involvement in treatment decision-making. Approximately half of all patients reported that they would prefer to decide on type of surgery together with their surgeon, slightly less than one-quarter indicated that they wished to primarily decide themselves, and slightly more than one-quarter preferred that their surgeon decide (Table 3). At 6-month follow-up, 67% of the patients in the RGCT group felt they had been actively involved in making the decision on primary surgery, either primarily themselves or jointly, as compared to 48% of patients in the UC group (p=0.06, Table 3). Both at 6 and 12-month follow-up, the large majority of patients (89-96%) in both the RGCT and the UC groups reported being (very) satisfied with the extent to which they were involved in decisions about their treatment (data not shown in tabular form). All 178 patients in the RGCT group were offered a rapid DNA test. A minority of 71 patients actually opted for a rapid test, and 38 opted for a semi-rapid test [8]. At 6 and 12-month follow-up, significantly more patients in the RGCT group who had received their DNA test result before primary surgery reported that RGCT had influenced their treatment decisions (“quite a bit” or “very much”) than patients in the RGCT group who did not receive a DNA test result before surgery (at 6-months: 33/56 (59%) versus 34/103 (33%), p=0.001; at 12-months: 35/56 (63%) versus 35/99 (35%), p < 0.001 for the RGCT and the UC groups, respectively) (Table 4).

At follow-up, the factor reported by patients in the RGCT group as having been most important in treatment decision-making was their physicians’ advice, reported by 134/162 (83%) patients at 6-month and by 131/157 (83%) at 12-month follow-up. The results of genetic counseling and testing were reported as being the second most important factor, reported by 78/162 (48%) at 6-month and by 71/157 (45%) at 12-month follow-up.

We conducted interviews with 34 patients, 27 of whom had been allocated to the RGCT group and 7 to the UC group. For all these patients, the interviews took place after the

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Results

PatientsIn total, 265 newly diagnosed high-risk BC patients were recruited into the trial, of whom 178 were allocated to the RGCT group and 87 to the UC group. All baseline questionnaires were completed. At 6 month follow-up, 245 (92%) questionnaires were returned, and at 12 month follow-up, 240 (91%). Sociodemographic and medical characteristics of the sample are shown in Table 2.

Experiences with RGCT and its effect on the decisional processAt baseline, there were no significant differences between the RGCT and the UC group in preferences for involvement in treatment decision-making. Approximately half of all patients reported that they would prefer to decide on type of surgery together with their surgeon, slightly less than one-quarter indicated that they wished to primarily decide themselves, and slightly more than one-quarter preferred that their surgeon decide (Table 3). At 6-month follow-up, 67% of the patients in the RGCT group felt they had been actively involved in making the decision on primary surgery, either primarily themselves or jointly, as compared to 48% of patients in the UC group (p=0.06, Table 3). Both at 6 and 12-month follow-up, the large majority of patients (89-96%) in both the RGCT and the UC groups reported being (very) satisfied with the extent to which they were involved in decisions about their treatment (data not shown in tabular form). All 178 patients in the RGCT group were offered a rapid DNA test. A minority of 71 patients actually opted for a rapid test, and 38 opted for a semi-rapid test [8]. At 6 and 12-month follow-up, significantly more patients in the RGCT group who had received their DNA test result before primary surgery reported that RGCT had influenced their treatment decisions (“quite a bit” or “very much”) than patients in the RGCT group who did not receive a DNA test result before surgery (at 6-months: 33/56 (59%) versus 34/103 (33%), p=0.001; at 12-months: 35/56 (63%) versus 35/99 (35%), p < 0.001 for the RGCT and the UC groups, respectively) (Table 4).

At follow-up, the factor reported by patients in the RGCT group as having been most important in treatment decision-making was their physicians’ advice, reported by 134/162 (83%) patients at 6-month and by 131/157 (83%) at 12-month follow-up. The results of genetic counseling and testing were reported as being the second most important factor, reported by 78/162 (48%) at 6-month and by 71/157 (45%) at 12-month follow-up.

We conducted interviews with 34 patients, 27 of whom had been allocated to the RGCT group and 7 to the UC group. For all these patients, the interviews took place after the


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patient had returned the last questionnaire. Of the 27 RGCT group interviewees, one had chosen not to accept referral to a clinical geneticist, and another had decided not to undergo DNA testing. Of the 7 interviewees from the UC group, 6 had nonetheless been referred for RGCT by their surgeon (which was an option in the usual care setting). In 13 of all of the interviewed patients a BRCA1/2 gene mutation had been found.

Table 2. Characteristics of patients

Intervention group (RGCT)N=178

Control group (Usual Care)N=87

p-value

Mean (SD) Mean (SD)

Age at diagnosis (years) 44.9 (11.4)Range 19-79

44.8 (11.2)Range 25-72

0.93

N (%) N (%)

Marital statusSingle/widow/divorcedPartner/married

36 (20.2%)142 (79.8%)

13 (14.9%)74 (85.1%)

0.30

Patient’s country of birthNetherlandsOther

162 (91%)16 (9%)

77 (88.5%)10 (11.5%)

0.52

Occupational statusEmployedNot employed (including retired, student, volunteer and homemaker)

128 (71.9%)50 (28.1%)

72 (82.8%) 15 (17.2%)

0.05

Children (yes) 130 (73%) 64 (74%) 0.93

Education (n)Primary/middle schoolHigh schoolCollege/universityOther

41 (23.0%)42 (23.6%)92 (51.7%)3 (1.7%)

22 (25.3%)27 (31.0%)38 (43.7%)0 (0%)

0.31

Laterality of current breast cancerUnilateralBilateral

173 (97.2%)5 (2.8%)

79 (90.8%)8 (9.2%)

0.02

Prior history of breast cancerIpsilateralContralateralNone

2 (1.1%) 12 (6.7%)164 (92.1%)

0 (0%)9 (10.3%) 78 (89.7%)

0.50

Tumor stageStage 0 (DCIS)Stage 1Stage 2Stage 3Missing

10 (5.6%) 65 (36.5%)78 (43.8%) 20 (11.2%)5 (2.8%)

7 (8.0%) 35 (40.2%)36 (41.4%)8 (9.2%)1 (1.1%)

0.79


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patient had returned the last questionnaire. Of the 27 RGCT group interviewees, one had chosen not to accept referral to a clinical geneticist, and another had decided not to undergo DNA testing. Of the 7 interviewees from the UC group, 6 had nonetheless been referred for RGCT by their surgeon (which was an option in the usual care setting). In 13 of all of the interviewed patients a BRCA1/2 gene mutation had been found.

Table 2. Characteristics of patients

Intervention group (RGCT)N=178

Control group (Usual Care)N=87

p-value

Mean (SD) Mean (SD)

Age at diagnosis (years) 44.9 (11.4)Range 19-79

44.8 (11.2)Range 25-72

0.93

N (%) N (%)

Marital statusSingle/widow/divorcedPartner/married

36 (20.2%)142 (79.8%)

13 (14.9%)74 (85.1%)

0.30

Patient’s country of birthNetherlandsOther

162 (91%)16 (9%)

77 (88.5%)10 (11.5%)

0.52

Occupational statusEmployedNot employed (including retired, student, volunteer and homemaker)

128 (71.9%)50 (28.1%)

72 (82.8%) 15 (17.2%)

0.05

Children (yes) 130 (73%) 64 (74%) 0.93

Education (n)Primary/middle schoolHigh schoolCollege/universityOther

41 (23.0%)42 (23.6%)92 (51.7%)3 (1.7%)

22 (25.3%)27 (31.0%)38 (43.7%)0 (0%)

0.31

Laterality of current breast cancerUnilateralBilateral

173 (97.2%)5 (2.8%)

79 (90.8%)8 (9.2%)

0.02

Prior history of breast cancerIpsilateralContralateralNone

2 (1.1%) 12 (6.7%)164 (92.1%)

0 (0%)9 (10.3%) 78 (89.7%)

0.50

Tumor stageStage 0 (DCIS)Stage 1Stage 2Stage 3Missing

10 (5.6%) 65 (36.5%)78 (43.8%) 20 (11.2%)5 (2.8%)

7 (8.0%) 35 (40.2%)36 (41.4%)8 (9.2%)1 (1.1%)

0.79

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132

Tabl

e 3.

Pat

ient

invo

lvem

ent i

n tr

eatm

ent d

ecis

ions

N (%

)Ba

selin

eN

=265

6 m

onth

sN

=245

12 m

onth

sN

=240

Who

wou

ld y

ou p

refe

r to

deci

de /

deci

ded

on ty

pe o

f sur

gery

?To

tal s

ampl

eN

=265

RGCT

gro

upN

=178

UC

grou

pN

=87

pRG

CT g

roup

N=1

63U

C gr

oup

N=8

2P

RGCT

gro

upN

=158

UC

grou

pN

=82

P

Prim

arily

sur

geon

72 (2

7.2%

)49

(27.

5%)

23 (2

6.4%

)0.

6253

(32.

5%)

43 (5

2.4%

)0.

0654

(34.

2%)

37 (4

5.1%

)0.

15

Surg

eon

and

patie

nt to

geth

er13

2 (4

9.8%

)84

(47.

2%)

48 (5

5.2%

)70

(42.

9%)

30 (3

6.6%

)68

(43.

0%)

30 (3

6.6%

)

Prim

arily

pat

ient

61 (2

3.0%

)45

(25.

3%)

16 (1

8.4%

)40

(24.

5%)

9 (1

1.0%

)36

(22.

8%)

15 (1

8.3%

)

* Th

e m

odel

was

cor

rect

ed fo

r ”la

tera

lity”

and

mis

sing

reco

rds

wer

e no

t use

d

Tabl

e 4.

Rep

orte

d in

fluen

ce o

f RG

CT o

n tr

eatm

ent d

ecis

ions

for p

atie

nts

with

in th

e RG

CT g

roup

Did

RG

CT in

fluen

ce

trea

tmen

t dec

isio

ns?

6 m

onth

s12

mon

ths

RGCT

gro

up, D

NA

resu

lt N

OT

befo

re s

urge

ryN

=103

RGCT

gro

up, D

NA

resu

lt BE

FORE

sur

gery

N

=56

p-va

lue

RGCT

gro

up, D

NA

resu

lt N

OT

befo

re s

urge

ryN

=99

RGCT

gro

up, D

NA

resu

lt BE

FORE

sur

gery

N

=56

p-va

lue

Not

at a

ll57

(55.

3%)

13 (2

3.2%

)0.

001

49 (4

9.5%

)9

(16.

1%)

<0.0

01

A lit

tle12

(11.

7%)

11 (1

9.6%

)15

(15.

2%)

12 (2

1.4%

)

Rath

er16

(15.

5%)

11 (1

9.6%

)22

(22.

2%)

11 (1

9.6%

)

Very

muc

h18

(17.

5%)

21 (3

7.5%

)13

(13.

1%)

24 (4

2.9%

)

Chapter 7

132

Tabl

e 3.

Pat

ient

invo

lvem

ent i

n tr

eatm

ent d

ecis

ions

N (%

)Ba

selin

eN

=265

6 m

onth

sN

=245

12 m

onth

sN

=240

Who

wou

ld y

ou p

refe

r to

deci

de /

deci

ded

on ty

pe o

f sur

gery

?To

tal s

ampl

eN

=265

RGCT

gro

upN

=178

UC

grou

pN

=87

pRG

CT g

roup

N=1

63U

C gr

oup

N=8

2P

RGCT

gro

upN

=158

UC

grou

pN

=82

P

Prim

arily

sur

geon

72 (2

7.2%

)49

(27.

5%)

23 (2

6.4%

)0.

6253

(32.

5%)

43 (5

2.4%

)0.

0654

(34.

2%)

37 (4

5.1%

)0.

15

Surg

eon

and

patie

nt to

geth

er13

2 (4

9.8%

)84

(47.

2%)

48 (5

5.2%

)70

(42.

9%)

30 (3

6.6%

)68

(43.

0%)

30 (3

6.6%

)

Prim

arily

pat

ient

61 (2

3.0%

)45

(25.

3%)

16 (1

8.4%

)40

(24.

5%)

9 (1

1.0%

)36

(22.

8%)

15 (1

8.3%

)

* Th

e m

odel

was

cor

rect

ed fo

r ”la

tera

lity”

and

mis

sing

reco

rds

wer

e no

t use

d

Tabl

e 4.

Rep

orte

d in

fluen

ce o

f RG

CT o

n tr

eatm

ent d

ecis

ions

for p

atie

nts

with

in th

e RG

CT g

roup

Did

RG

CT in

fluen

ce

trea

tmen

t dec

isio

ns?

6 m

onth

s12

mon

ths

RGCT

gro

up, D

NA

resu

lt N

OT

befo

re s

urge

ryN

=103

RGCT

gro

up, D

NA

resu

lt BE

FORE

sur

gery

N

=56

p-va

lue

RGCT

gro

up, D

NA

resu

lt N

OT

befo

re s

urge

ryN

=99

RGCT

gro

up, D

NA

resu

lt BE

FORE

sur

gery

N

=56

p-va

lue

Not

at a

ll57

(55.

3%)

13 (2

3.2%

)0.

001

49 (4

9.5%

)9

(16.

1%)

<0.0

01

A lit

tle12

(11.

7%)

11 (1

9.6%

)15

(15.

2%)

12 (2

1.4%

)

Rath

er16

(15.

5%)

11 (1

9.6%

)22

(22.

2%)

11 (1

9.6%

)

Very

muc

h18

(17.

5%)

21 (3

7.5%

)13

(13.

1%)

24 (4

2.9%

)


133

CHAPTER 7

Eighteen interviewees reported that the results of RGCT had influenced their decision making. Many of the women (n = 11) told us that the RGCT results had supported them in their decision to undergo secondary risk-reducing mastectomy and/or bilateral salpin-go-oophorectomy in case of a positive DNA test result, while others (n = 7) indicated that the RGCT results had supported their decision to undergo breast conserving treatment in case of a negative DNA test result. However, other patients (n = 13) reported that the RGCT had not influenced their decision making. For some of these women it was because they had already made up their minds regarding their treatment before undergoing RGCT; for others it reflected the fact that their DNA test results only became available after their primary surgery.

Attitudes of patients towards the timing of GCT and preferences for referral sourceAt follow-up, approximately 80% of patients in the RGCT group reported being (very) sat-isfied with the time it took to receive their DNA test results: (130/159 (82%) at 6-months, and 124/154 (81%) at 12-months). As one would expect, RGCT patients who received their DNA test results before primary surgery were more satisfied with the timing of the DNA test procedures and reporting than those who received their test results after primary surgery (52/56 (93%) versus 78/103 (76%) at 6-months, and 48/56 (86%) versus 76/98 (78%) at 12-months, respectively).

At 6-month follow-up, 139/160 (87%) of patients in the RGCT group considered ‘shortly after diagnosis, before primary surgery’ to be the best point in time to be referred for genetic counseling and testing. Others preferred ‘after primary surgery’ (7/160, 4%), ‘after adjuvant treatment (7/160, 4%) or another time point. Examples given for ‘other’ were ‘as soon as possible’ and ‘after the most intensive treatment’. At 6-month follow-up, 119/161 (74%) of patients in the RGCT group reported that they considered the surgeon to be the most appropriate source of referral to RGCT, 33/161 (20%) preferred their medical oncologist and 9/191 (6%) their general practitioner.

Attitudes of patients towards RGCT and its implementation At both 6 and 12-month follow-up, almost all patients in the RGCT group were (very) satisfied with the fact that they had been offered RGCT (158/162 (98%) at 6-months and 155/156 (99%) at 12-months). The large majority would recommend RGCT to other eligible BC patients (133/161 (83%) and 124/156 (79%) at 6 and 12-month follow-up, respectively). Of the patients who were interviewed (n=34), all but one indicated that RGCT should be offered to all women newly diagnosed with breast cancer who are eligible for genetic counseling and testing.


133

CHAPTER 7

Eighteen interviewees reported that the results of RGCT had influenced their decision making. Many of the women (n = 11) told us that the RGCT results had supported them in their decision to undergo secondary risk-reducing mastectomy and/or bilateral salpin-go-oophorectomy in case of a positive DNA test result, while others (n = 7) indicated that the RGCT results had supported their decision to undergo breast conserving treatment in case of a negative DNA test result. However, other patients (n = 13) reported that the RGCT had not influenced their decision making. For some of these women it was because they had already made up their minds regarding their treatment before undergoing RGCT; for others it reflected the fact that their DNA test results only became available after their primary surgery.

Attitudes of patients towards the timing of GCT and preferences for referral sourceAt follow-up, approximately 80% of patients in the RGCT group reported being (very) sat-isfied with the time it took to receive their DNA test results: (130/159 (82%) at 6-months, and 124/154 (81%) at 12-months). As one would expect, RGCT patients who received their DNA test results before primary surgery were more satisfied with the timing of the DNA test procedures and reporting than those who received their test results after primary surgery (52/56 (93%) versus 78/103 (76%) at 6-months, and 48/56 (86%) versus 76/98 (78%) at 12-months, respectively).

At 6-month follow-up, 139/160 (87%) of patients in the RGCT group considered ‘shortly after diagnosis, before primary surgery’ to be the best point in time to be referred for genetic counseling and testing. Others preferred ‘after primary surgery’ (7/160, 4%), ‘after adjuvant treatment (7/160, 4%) or another time point. Examples given for ‘other’ were ‘as soon as possible’ and ‘after the most intensive treatment’. At 6-month follow-up, 119/161 (74%) of patients in the RGCT group reported that they considered the surgeon to be the most appropriate source of referral to RGCT, 33/161 (20%) preferred their medical oncologist and 9/191 (6%) their general practitioner.

Attitudes of patients towards RGCT and its implementation At both 6 and 12-month follow-up, almost all patients in the RGCT group were (very) satisfied with the fact that they had been offered RGCT (158/162 (98%) at 6-months and 155/156 (99%) at 12-months). The large majority would recommend RGCT to other eligible BC patients (133/161 (83%) and 124/156 (79%) at 6 and 12-month follow-up, respectively). Of the patients who were interviewed (n=34), all but one indicated that RGCT should be offered to all women newly diagnosed with breast cancer who are eligible for genetic counseling and testing.

Chapter 7

134

ProfessionalsFifty-three (62%) of the 86 professionals completed a questionnaire at baseline (i.e., before the start of patient recruitment). At follow-up, 45 of 74 professionals (61%) completed a questionnaire. Due to changes in personnel in the participating hospitals, the number and composition of the professional sample was not identical at the two assessment points. In total, 29 professionals completed both questionnaires and were included in the analysis. This included 16 surgeons and 13 specialized nurses (Table 5). On average, they had 11 years (range = less than 1 year to 30 years) of experience in breast cancer care.

Table 5. Characteristics of professionals

Medical professionals Total sampleN = 29

SurgeonsN= 16

Specialized nursesN= 13

p-value

Gender (N=28, 1 missing)• male• female

12 (43%)16 (57%)

12 (80%)3 (20%)

0 (0%)13 (100%)

<0.001

Age at the start of the study (N=24, 5 missing)• mean (SD) in years• range

45.3 (10.3)27-61

51.9 (8.2) 39.2 (8.3) 0.001

Discipline• surgeon / surgical resident• nurse practitioner / specialized nurse

16 (55.2%)

13 (44.8%)

n.a. n.a. n.a.

Type of hospital • university medical center / specialized

cancer hospital• community hospital

5 (17.2%)

24 (82.8%)

2 (12.5%)

14 (87.5%)

3 (23.1%)

10 (76.9%)

Experience in breast cancer care in years, at the start of the study (N=24, 5 missing)• mean (SD)• median• range

11.1 (9.9)8.00-30

17.5 (9.7) 5.3 (4.9) 0.001

* N varies slightly due to missing values.

Surgeons’ experiences with RGCT and its effect on the decisional processHalf (7/14, 2 missing answers) of the surgeons reported that a different type of surgery was either sometimes or often performed as a result of RGCT. Almost a third (5/16, 31%) of surgeons reported that they sometimes performed primary surgery before DNA test results were available, and 7/16 (44%) reported this to be either often or always. Most surgeons (10/16, 63%) reported that they seldom or never postponed primary surgery because either they or the patient wanted to wait for the DNA test results; the remaining 37% of the surgeons indicated that this was sometimes the case.

Chapter 7

134

ProfessionalsFifty-three (62%) of the 86 professionals completed a questionnaire at baseline (i.e., before the start of patient recruitment). At follow-up, 45 of 74 professionals (61%) completed a questionnaire. Due to changes in personnel in the participating hospitals, the number and composition of the professional sample was not identical at the two assessment points. In total, 29 professionals completed both questionnaires and were included in the analysis. This included 16 surgeons and 13 specialized nurses (Table 5). On average, they had 11 years (range = less than 1 year to 30 years) of experience in breast cancer care.

Table 5. Characteristics of professionals

Medical professionals Total sampleN = 29

SurgeonsN= 16

Specialized nursesN= 13

p-value

Gender (N=28, 1 missing)• male• female

12 (43%)16 (57%)

12 (80%)3 (20%)

0 (0%)13 (100%)

<0.001

Age at the start of the study (N=24, 5 missing)• mean (SD) in years• range

45.3 (10.3)27-61

51.9 (8.2) 39.2 (8.3) 0.001

Discipline• surgeon / surgical resident• nurse practitioner / specialized nurse

16 (55.2%)

13 (44.8%)

n.a. n.a. n.a.

Type of hospital • university medical center / specialized

cancer hospital• community hospital

5 (17.2%)

24 (82.8%)

2 (12.5%)

14 (87.5%)

3 (23.1%)

10 (76.9%)

Experience in breast cancer care in years, at the start of the study (N=24, 5 missing)• mean (SD)• median• range

11.1 (9.9)8.00-30

17.5 (9.7) 5.3 (4.9) 0.001

* N varies slightly due to missing values.

Surgeons’ experiences with RGCT and its effect on the decisional processHalf (7/14, 2 missing answers) of the surgeons reported that a different type of surgery was either sometimes or often performed as a result of RGCT. Almost a third (5/16, 31%) of surgeons reported that they sometimes performed primary surgery before DNA test results were available, and 7/16 (44%) reported this to be either often or always. Most surgeons (10/16, 63%) reported that they seldom or never postponed primary surgery because either they or the patient wanted to wait for the DNA test results; the remaining 37% of the surgeons indicated that this was sometimes the case.


135

CHAPTER 7

Time investment of RGCT for professionalsAll surgeons who completed this question (14/14) reported having spent (much) more time on discussing treatment options with patients who underwent RGCT compared with other breast cancer patients; this was the case among 5/9 (56%) of the specialized nurses. Surgeons also reported having spent (much) more time on the decisional process (12 of 12 who responded to this question versus 7 of the 9 specialized nurses), on discussing options for risk-reducing surgery (13/13, and 8/9 for surgeons and nurses, respectively), and on discussing options for reconstructive surgery (9/13 and 6/9, respectively). The remaining health professionals reported that RGCT did not influence the amount of time that they spent with their patients.

Attitudes of professionals towards timing of GCT and referring physicianWhen asked for the best timing for referral to GCT, 12/27 (44%) of professionals preferred ‘shortly after diagnosis, before primary surgery’, 6 (22%) preferred after primary surgical treatment and 3 (11%) after adjuvant treatment. Six respondents chose ‘otherwise’, e.g. “if the results of RGCT may influence treatment decisions”, “dependent on the patient’s preference” or “before radiotherapy”. There were two missing answers.

Most professionals (22/26, 85%) reported that the surgeon is the physician most suitable to refer for RGCT. The other professionals reported the medical oncologist (3/26, 12%) or general practitioner (1/26, 4%) to be the most suitable. Three health professionals did not complete this item.

Attitudes of professionals towards RGCT and implementation: should RGCT be routinely offered?After completion of their participation in the study, 7/16 (44%) of surgeons and 4/12 (33%) of specialized nurses indicated that RGCT is burdensome for the patient (Table 6). Most surgeons and all of the specialized nurses (81% before and 94% after the study, Table 6) believed that it is important to have the possibility to refer patients for RGCT. At study completion, most of the health professionals believed that the advantages of having the option of referring women for RGCT outweigh the disadvantages, for both patients and professionals, and 20/28 (72%) of professionals (strongly) agreed with the statement that RGCT should be routinely offered to newly diagnosed breast cancer patients eligible for GCT.


135

CHAPTER 7

Time investment of RGCT for professionalsAll surgeons who completed this question (14/14) reported having spent (much) more time on discussing treatment options with patients who underwent RGCT compared with other breast cancer patients; this was the case among 5/9 (56%) of the specialized nurses. Surgeons also reported having spent (much) more time on the decisional process (12 of 12 who responded to this question versus 7 of the 9 specialized nurses), on discussing options for risk-reducing surgery (13/13, and 8/9 for surgeons and nurses, respectively), and on discussing options for reconstructive surgery (9/13 and 6/9, respectively). The remaining health professionals reported that RGCT did not influence the amount of time that they spent with their patients.

Attitudes of professionals towards timing of GCT and referring physicianWhen asked for the best timing for referral to GCT, 12/27 (44%) of professionals preferred ‘shortly after diagnosis, before primary surgery’, 6 (22%) preferred after primary surgical treatment and 3 (11%) after adjuvant treatment. Six respondents chose ‘otherwise’, e.g. “if the results of RGCT may influence treatment decisions”, “dependent on the patient’s preference” or “before radiotherapy”. There were two missing answers.

Most professionals (22/26, 85%) reported that the surgeon is the physician most suitable to refer for RGCT. The other professionals reported the medical oncologist (3/26, 12%) or general practitioner (1/26, 4%) to be the most suitable. Three health professionals did not complete this item.

Attitudes of professionals towards RGCT and implementation: should RGCT be routinely offered?After completion of their participation in the study, 7/16 (44%) of surgeons and 4/12 (33%) of specialized nurses indicated that RGCT is burdensome for the patient (Table 6). Most surgeons and all of the specialized nurses (81% before and 94% after the study, Table 6) believed that it is important to have the possibility to refer patients for RGCT. At study completion, most of the health professionals believed that the advantages of having the option of referring women for RGCT outweigh the disadvantages, for both patients and professionals, and 20/28 (72%) of professionals (strongly) agreed with the statement that RGCT should be routinely offered to newly diagnosed breast cancer patients eligible for GCT.

Chapter 7

136

Tabl

e 6.

Att

itude

s of

BC

prof

essi

onal

s re

gard

ing

RGCT

in n

ewly

dia

gnos

ed b

reas

t can

cer p

atie

nts,

bef

ore

and

afte

r the

tria

l

Atti

tude

s to

war

ds R

GCT

in n

ewly

di

agno

sed

brea

st c

ance

r pa

tien

tsD

on’t

agre

e (a

t all)

N (%

)

Don

’t ag

ree,

do

n’t d

isag

ree

N (%

)

(Tot

ally

) agr

ee

N (%

)

Don

’t ag

ree

(at a

ll)N

(%)

Don

’t ag

ree,

do

n’t d

isag

ree

N (%

)

(Tot

ally

) agr

ee

N (%

)

At th

e st

art o

f the

stu

dyAf

ter

the

stud

y

I con

side

r the

pos

sibi

lity

of re

ferr

al fo

r RG

CT

as im

port

ant

Surg

eons

0 (0%

)3/

16

(18.

8%)

13/1

6(8

1.3%

)0 (0

%)

1/16

(6

.3%

)15

/16

(93.

8%)

BC n

urse

s0 (0

%)

0 (0%

)12

/12

(100

%)

0 (0%

)0 (0

%)

12/1

2(1

00%

)

I con

side

r RG

CT a

s bu

rden

som

e fo

r the

pa

tient

(n=

51)

Surg

eons

6/16

(3

7.5%

)5/

16

(31.

3%)

5/16

(3

1.3%

)6/

16

(37.

5%)

3/16

(1

8.8%

)7/

16

(43.

8%)

BC n

urse

s1/

12

(8.3

%)

3/12

(2

5%)

8/12

(6

6.7%

)2/

12

(16.

7%)

6/12

(5

0%)

4/12

(3

3.3%

)

The

adva

ntag

es o

f RG

CT o

utw

eigh

the

disa

dvan

tage

s fo

r the

pro

fess

iona

l (n

=50)

Surg

eons

1/16

(6

.3%

)4/

16

(25%

)11

/16

(68.

8%)

3/16

(1

8.8%

)1/

16(6

.3%

)12

/16

(75.

0%)

BC n

urse

s1/

11

(9.1

%)

5/11

(45.

5%)

5/11

(4

5.5%

)1/

12

(8.3

%)

2/12

(1

6.7%

)9/

12

(75%

)

The

adva

ntag

es o

f RG

CT o

utw

eigh

the

disa

dvan

tage

s fo

r the

pat

ient

(n

=51)

Surg

eons

2/16

(1

2.5%

)1/

16

(6.3

%)

13/1

6 (8

1.3%

)4/

15

(26.

7%)

2/15

(1

3.3%

)9/

15

(60%

)

BC n

urse

s0

3/12

(2

5%)

9/12

(7

5%)

02/

12

(16.

7%)

10/1

2 (8

3.3%

)

RGCT

sho

uld

be o

ffere

d ro

utin

ely

to e

ligib

le

new

ly d

iagn

osed

bre

ast c

ance

r pat

ient

sAl

l pro

fess

iona

lsn.

a.n.

a.n.

a.6 (2

1.4%

)2 (7

.1%

)20

(7

1.5%

)

N v

arie

s sl

ight

ly d

ue to

mis

sing

val

ues

Chapter 7

136

Tabl

e 6.

Att

itude

s of

BC

prof

essi

onal

s re

gard

ing

RGCT

in n

ewly

dia

gnos

ed b

reas

t can

cer p

atie

nts,

bef

ore

and

afte

r the

tria

l

Atti

tude

s to

war

ds R

GCT

in n

ewly

di

agno

sed

brea

st c

ance

r pa

tien

tsD

on’t

agre

e (a

t all)

N (%

)

Don

’t ag

ree,

do

n’t d

isag

ree

N (%

)

(Tot

ally

) agr

ee

N (%

)

Don

’t ag

ree

(at a

ll)N

(%)

Don

’t ag

ree,

do

n’t d

isag

ree

N (%

)

(Tot

ally

) agr

ee

N (%

)

At th

e st

art o

f the

stu

dyAf

ter

the

stud

y

I con

side

r the

pos

sibi

lity

of re

ferr

al fo

r RG

CT

as im

port

ant

Surg

eons

0 (0%

)3/

16

(18.

8%)

13/1

6(8

1.3%

)0 (0

%)

1/16

(6

.3%

)15

/16

(93.

8%)

BC n

urse

s0 (0

%)

0 (0%

)12

/12

(100

%)

0 (0%

)0 (0

%)

12/1

2(1

00%

)

I con

side

r RG

CT a

s bu

rden

som

e fo

r the

pa

tient

(n=

51)

Surg

eons

6/16

(3

7.5%

)5/

16

(31.

3%)

5/16

(3

1.3%

)6/

16

(37.

5%)

3/16

(1

8.8%

)7/

16

(43.

8%)

BC n

urse

s1/

12

(8.3

%)

3/12

(2

5%)

8/12

(6

6.7%

)2/

12

(16.

7%)

6/12

(5

0%)

4/12

(3

3.3%

)

The

adva

ntag

es o

f RG

CT o

utw

eigh

the

disa

dvan

tage

s fo

r the

pro

fess

iona

l (n

=50)

Surg

eons

1/16

(6

.3%

)4/

16

(25%

)11

/16

(68.

8%)

3/16

(1

8.8%

)1/

16(6

.3%

)12

/16

(75.

0%)

BC n

urse

s1/

11

(9.1

%)

5/11

(45.

5%)

5/11

(4

5.5%

)1/

12

(8.3

%)

2/12

(1

6.7%

)9/

12

(75%

)

The

adva

ntag

es o

f RG

CT o

utw

eigh

the

disa

dvan

tage

s fo

r the

pat

ient

(n

=51)

Surg

eons

2/16

(1

2.5%

)1/

16

(6.3

%)

13/1

6 (8

1.3%

)4/

15

(26.

7%)

2/15

(1

3.3%

)9/

15

(60%

)

BC n

urse

s0

3/12

(2

5%)

9/12

(7

5%)

02/

12

(16.

7%)

10/1

2 (8

3.3%

)

RGCT

sho

uld

be o

ffere

d ro

utin

ely

to e

ligib

le

new

ly d

iagn

osed

bre

ast c

ance

r pat

ient

sAl

l pro

fess

iona

lsn.

a.n.

a.n.

a.6 (2

1.4%

)2 (7

.1%

)20

(7

1.5%

)

N v

arie

s sl

ight

ly d

ue to

mis

sing

val

ues


137

CHAPTER 7

Discussion

To the best of our knowledge, this is the first large scale study to report on the attitudes towards and experiences with RGCT of both BC patients and health professionals. Our results indicate that the large majority of patients were (very) satisfied with having been offered RGCT, and that receiving DNA test results before primary surgery influenced treatment decisions. Medical professionals reported spending more time, on average, discussing treatment options with those patients who were offered RGCT than with those who were not. Although almost 40% of medical professionals considered RGCT to be burdensome for patients, the large majority believed that the advantages of RGCT out-weigh the disadvantages. The majority of both patients and professionals believed that the possibility of RGCT should be discussed with all high-risk BC patients, and that surgeons should be the preferred referral source for RGCT.

Previous studies among BC patients and BC patient advocates have reported that between 78% and 87% of patients prefer to make decisions regarding surgical treatment either pri-marily themselves or together with their surgeon [12,13]. At baseline, a similar percentage (73%) of the patients in our study indicated that they preferred to make the decision about their surgical treatment themselves or together with their surgeon. At 6-month follow-up, 68% of those who had routinely been offered RGCT indicated that they had actually been actively involved in the decision about their surgery. This percentage was substantially lower (48%) among women in the UC situation. Differences in the background of the respondents (being high-risk or not, and country of origin), time period, and timing of data collection (preferences before or experiences after the decision was made), make it diffi-cult to interpret the differences between these studies. However, our results suggest that RGCT may facilitate shared decision-making and increase patient empowerment [14-17].

The finding that patients reported that having received DNA test results before primary surgery significantly influenced treatment decisions is reflected in the finding from our RCT that patients within the RGCT group who received DNA test results before surgery underwent a direct bilateral mastectomy significantly more often than patients who were offered usual care [8]. However, as mentioned in some of the patient interviews, the influ-ence of RGCT on treatment decisions may also work in the opposite direction; patients who learn that they do not carry a BRCA gene mutation may feel more confident in opting for a lumpectomy.

Almost all patients who were offered RGCT were (very) satisfied with this opportunity. In part, this may reflect a positive effect of RGCT on psychological distress. In a study by Chris-tie et al., patients who had not yet undergone definitive BC surgery reported diminished


137

CHAPTER 7

Discussion

To the best of our knowledge, this is the first large scale study to report on the attitudes towards and experiences with RGCT of both BC patients and health professionals. Our results indicate that the large majority of patients were (very) satisfied with having been offered RGCT, and that receiving DNA test results before primary surgery influenced treatment decisions. Medical professionals reported spending more time, on average, discussing treatment options with those patients who were offered RGCT than with those who were not. Although almost 40% of medical professionals considered RGCT to be burdensome for patients, the large majority believed that the advantages of RGCT out-weigh the disadvantages. The majority of both patients and professionals believed that the possibility of RGCT should be discussed with all high-risk BC patients, and that surgeons should be the preferred referral source for RGCT.

Previous studies among BC patients and BC patient advocates have reported that between 78% and 87% of patients prefer to make decisions regarding surgical treatment either pri-marily themselves or together with their surgeon [12,13]. At baseline, a similar percentage (73%) of the patients in our study indicated that they preferred to make the decision about their surgical treatment themselves or together with their surgeon. At 6-month follow-up, 68% of those who had routinely been offered RGCT indicated that they had actually been actively involved in the decision about their surgery. This percentage was substantially lower (48%) among women in the UC situation. Differences in the background of the respondents (being high-risk or not, and country of origin), time period, and timing of data collection (preferences before or experiences after the decision was made), make it diffi-cult to interpret the differences between these studies. However, our results suggest that RGCT may facilitate shared decision-making and increase patient empowerment [14-17].

The finding that patients reported that having received DNA test results before primary surgery significantly influenced treatment decisions is reflected in the finding from our RCT that patients within the RGCT group who received DNA test results before surgery underwent a direct bilateral mastectomy significantly more often than patients who were offered usual care [8]. However, as mentioned in some of the patient interviews, the influ-ence of RGCT on treatment decisions may also work in the opposite direction; patients who learn that they do not carry a BRCA gene mutation may feel more confident in opting for a lumpectomy.

Almost all patients who were offered RGCT were (very) satisfied with this opportunity. In part, this may reflect a positive effect of RGCT on psychological distress. In a study by Chris-tie et al., patients who had not yet undergone definitive BC surgery reported diminished

Chapter 7

138

levels of distress after having undergone genetic counseling [18]. In any case, in our RCT we did not observe any measurable negative effect of RGCT on psychological well-being, body image or sexuality [9]. Another possible explanation for the high observed levels of satis-faction may be that patients tended to feel that they had been more actively involved in treatment decision making, and that RGCT provided more information considered useful for decision making.

A majority (68%-96%) of the health professionals reported having spent more time dis-cussing several aspects of decision making with their patients who were offered RGCT, including options for reconstructive and risk-reducing surgery. Douma et al. reported that 42% of health professionals considered the extra time involved in counseling patients as a disadvantage of RGCT [5]. Future studies with a longer follow-up are needed to better estimate how much extra time is actually spent in the RGCT setting, and if there are ways to facilitate more efficient (but equally effective) communication (e.g., with the use of deci-sion tools) [19]. In some cases, RGCT may actually save time in the long run, by addressing important issues (e.g., risk-reducing surgery) early in the treatment process.

The health professionals in the study by Douma et al. also raised concerns about the high costs of genetic testing in the RGCT setting, possibly because they expected that improved ascertainment of eligible women would lead to an increased demand for genetic testing [5]. Theoretically, introduction of RGCT would not be expected to increase the absolute number of referrals, only their timing. If there would be any extra costs involved in RGCT, these would likely be due to an increased number of referrals secondary to increased awareness among patients and professionals of eligibility for GCT. In our opinion, such increased awareness should be considered as valuable, considering that more eligible BC patients would be referred and would be informed about their own genetic status and its consequences for their relatives.

Forty-six% and 39% of the health professionals in our study (at baseline and at follow-up, respectively) considered RGCT to be stressful for their patients. These percentages are similar to those reported by Douma et al., where 44% of professionals thought their patients considered RGCT to be stressful albeit beneficial [5]. These percentages are substantial, and are not surprising considering that, before RGCT was introduced, many health professionals believed that offering genetic testing shortly after diagnosis would be too stressful for their patients [20]. Nevertheless, the majority of professionals in our study believed that the advantages of RGCT outweigh its disadvantages for both patients and professionals.

Chapter 7

138

levels of distress after having undergone genetic counseling [18]. In any case, in our RCT we did not observe any measurable negative effect of RGCT on psychological well-being, body image or sexuality [9]. Another possible explanation for the high observed levels of satis-faction may be that patients tended to feel that they had been more actively involved in treatment decision making, and that RGCT provided more information considered useful for decision making.

A majority (68%-96%) of the health professionals reported having spent more time dis-cussing several aspects of decision making with their patients who were offered RGCT, including options for reconstructive and risk-reducing surgery. Douma et al. reported that 42% of health professionals considered the extra time involved in counseling patients as a disadvantage of RGCT [5]. Future studies with a longer follow-up are needed to better estimate how much extra time is actually spent in the RGCT setting, and if there are ways to facilitate more efficient (but equally effective) communication (e.g., with the use of deci-sion tools) [19]. In some cases, RGCT may actually save time in the long run, by addressing important issues (e.g., risk-reducing surgery) early in the treatment process.

The health professionals in the study by Douma et al. also raised concerns about the high costs of genetic testing in the RGCT setting, possibly because they expected that improved ascertainment of eligible women would lead to an increased demand for genetic testing [5]. Theoretically, introduction of RGCT would not be expected to increase the absolute number of referrals, only their timing. If there would be any extra costs involved in RGCT, these would likely be due to an increased number of referrals secondary to increased awareness among patients and professionals of eligibility for GCT. In our opinion, such increased awareness should be considered as valuable, considering that more eligible BC patients would be referred and would be informed about their own genetic status and its consequences for their relatives.

Forty-six% and 39% of the health professionals in our study (at baseline and at follow-up, respectively) considered RGCT to be stressful for their patients. These percentages are similar to those reported by Douma et al., where 44% of professionals thought their patients considered RGCT to be stressful albeit beneficial [5]. These percentages are substantial, and are not surprising considering that, before RGCT was introduced, many health professionals believed that offering genetic testing shortly after diagnosis would be too stressful for their patients [20]. Nevertheless, the majority of professionals in our study believed that the advantages of RGCT outweigh its disadvantages for both patients and professionals.


139

CHAPTER 7

Most of the health professionals (72%) in our study believed that RGCT should be offered to all eligible, newly diagnosed BC patients. This is a much higher percentage than reported in a previous study by Van Riel et al., where only 10% of BC professionals considered directly after diagnosis to be the best time to refer BC patients for GCT [1]. It is also a substantially higher percentage than reported by Douma et al., where only 44% of profes-sionals believed that genetic testing should be offered shortly after diagnosis [5].

It is important to note several limitations of our study. First, patients who were eligible for participation in our study but declined to do so may have had negative attitudes towards RGCT. This may limit the extent to which our results can be generalized to the entire population of high-risk women. However, our results are pertinent for those women who are open to the possibility of undergoing RGCT. Second, the sample size of health pro-fessionals who returned both the baseline and follow-up questionnaires was relatively small (n=29). However, we have also analyzed data of all 45 professionals who completed the follow-up questionnaire, and the results were comparable to those of the group of 29 professionals who returned both questionnaires (data not shown). Third, at the time we collected our data, patients who were offered RGCT generally received genetic testing for BRCA1 and BRCA2 gene mutations only. Given that next generation sequencing (NGS) cancer gene panels will be used increasingly in the future [21], studies will be needed to investigate their impact on treatment decision making. This is especially important in that, to our knowledge, most other genes in those panels are not considered to be asso-ciated with such increased risks of another primary breast cancer that they would justify risk-reducing surgery.

Strengths of our study include the RCT context in which it was imbedded, the multicenter setting with academic and regional hospitals, the substantial patient sample size, and the longitudinal nature of the data collection.


139

CHAPTER 7

Most of the health professionals (72%) in our study believed that RGCT should be offered to all eligible, newly diagnosed BC patients. This is a much higher percentage than reported in a previous study by Van Riel et al., where only 10% of BC professionals considered directly after diagnosis to be the best time to refer BC patients for GCT [1]. It is also a substantially higher percentage than reported by Douma et al., where only 44% of profes-sionals believed that genetic testing should be offered shortly after diagnosis [5].

It is important to note several limitations of our study. First, patients who were eligible for participation in our study but declined to do so may have had negative attitudes towards RGCT. This may limit the extent to which our results can be generalized to the entire population of high-risk women. However, our results are pertinent for those women who are open to the possibility of undergoing RGCT. Second, the sample size of health pro-fessionals who returned both the baseline and follow-up questionnaires was relatively small (n=29). However, we have also analyzed data of all 45 professionals who completed the follow-up questionnaire, and the results were comparable to those of the group of 29 professionals who returned both questionnaires (data not shown). Third, at the time we collected our data, patients who were offered RGCT generally received genetic testing for BRCA1 and BRCA2 gene mutations only. Given that next generation sequencing (NGS) cancer gene panels will be used increasingly in the future [21], studies will be needed to investigate their impact on treatment decision making. This is especially important in that, to our knowledge, most other genes in those panels are not considered to be asso-ciated with such increased risks of another primary breast cancer that they would justify risk-reducing surgery.

Strengths of our study include the RCT context in which it was imbedded, the multicenter setting with academic and regional hospitals, the substantial patient sample size, and the longitudinal nature of the data collection.

Chapter 7

140

Conclusions

In conclusion, our results indicate that, although RGCT may be burdensome for patients and time-consuming for health professionals, the majority of patients and professionals believe that RGCT can be helpful in facilitating shared treatment decision making. Most patients and professionals also believe that RGCT should be offered by surgeons to all high-risk BC patients. These results are promising and reflect the growing acceptance of RGCT as part of standard BC care in countries such as the United Kingdom and the Netherlands. Studies in several other countries have suggested that RGCT is acceptable to many BC patients and surgeons [5,22], and that RGCT may impact on risk-reducing surgery [23,24]. We expect that genetic testing will be performed increasingly quickly and efficiently, so that more patients will be able to receive DNA test results before primary surgery. As the technology of RGCT advances, additional gains can be expected in terms of shared decision making and patient empowerment.

Acknowledgements

We would like to thank Annemarie den Harder for her contribution to the literature review, and Jacobien Kieffer, for advising on the statistical analysis. Funding for this study was provided by the NutsOHRA Foundation, grant number SNO-T-0701-95.

The trial is registered at http://www.clinicaltrials.gov, number NCT00783822.

Chapter 7

140

Conclusions

In conclusion, our results indicate that, although RGCT may be burdensome for patients and time-consuming for health professionals, the majority of patients and professionals believe that RGCT can be helpful in facilitating shared treatment decision making. Most patients and professionals also believe that RGCT should be offered by surgeons to all high-risk BC patients. These results are promising and reflect the growing acceptance of RGCT as part of standard BC care in countries such as the United Kingdom and the Netherlands. Studies in several other countries have suggested that RGCT is acceptable to many BC patients and surgeons [5,22], and that RGCT may impact on risk-reducing surgery [23,24]. We expect that genetic testing will be performed increasingly quickly and efficiently, so that more patients will be able to receive DNA test results before primary surgery. As the technology of RGCT advances, additional gains can be expected in terms of shared decision making and patient empowerment.

Acknowledgements

We would like to thank Annemarie den Harder for her contribution to the literature review, and Jacobien Kieffer, for advising on the statistical analysis. Funding for this study was provided by the NutsOHRA Foundation, grant number SNO-T-0701-95.

The trial is registered at http://www.clinicaltrials.gov, number NCT00783822.


141

CHAPTER 7

References1. Van Riel E, Warlam-Rodenhuis CC, Verhoef S, et al.: BRCA testing of breast cancer patients: medical specialists’

referral patterns, knowledge and attitudes to genetic testing. Eur J Cancer Care (Engl) 2010; 19:369-376.2. Meiser B, Tucker K, Friedlander M, et al.: Genetic counselling and testing for inherited gene mutations in newly

diagnosed patients with breast cancer: a review of the existing literature and a proposed research agenda. Breast Cancer Res 2008; 10:216.

3. Schwartz MD, Lerman C, Brogan B, et al.: Impact of BRCA1/BRCA2 counseling and testing on newly diagnosed breast cancer patients. J Clin Oncol 2004; 22:1823-1829.

4. Wevers MR, Ausems MG, Verhoef S, et al.: Behavioral and psychosocial effects of rapid genetic counseling and testing in newly diagnosed breast cancer patients: Design of a multicenter randomized clinical trial. BMC Cancer 2011; 11:6.

5. Douma KF, Meiser B, Kirk J, et al.: Health professionals’ evaluation of delivering treatment-focused genetic testing to women newly diagnosed with breast cancer. Fam Cancer 2015; 14:265-272.

6. Zilliacus E, Meiser B, Gleeson M, et al.: Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing amongst women recently diagnosed with breast cancer. Support Care Cancer 2012; 20:2949-2958.

7. Watts KJ, Meiser B, Mitchell G, et al.: How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer. BMC Cancer 2012; 12:320.

8. Wevers MR, Aaronson NK, Verhoef S, et al.: Impact of rapid genetic counselling and testing on the decision to undergo immediate or delayed prophylactic mastectomy in newly diagnosed breast cancer patients: findings from a randomised controlled trial. Br J Cancer 2014.

9. Wevers MR, Ausems MG, Verhoef S, et al.: Does rapid genetic counseling and testing in newly diagnosed breast cancer patients cause additional psychosocial distress? results from a randomized clinical trial. Genet Med 2015.

10. The Netherlands foundation for the detection of hereditary tumours (STOET). The Dutch Society of Clinical Genetics (VKGN): “Erfelijke tumoren: richtijnen voor diagnostiek en preventie” 3rd edition, 2005:10–13.

11. Oncoline. http://www.oncoline.nl. Date of access 10-4-200812. Katz SJ, Lantz PM, Janz NK, et al.: Patient involvement in surgery treatment decisions for breast cancer. J Clin

Oncol 2005; 23:5526-5533.13. Butow P, Harrison JD, Choy ET, et al.: Health professional and consumer views on involving breast cancer

patients in the multidisciplinary discussion of their disease and treatment plan. Cancer 2007; 110:1937-1944.14. Castro EM, Van RT, Vanhaecht K, et al.: Patient empowerment, patient participation and patient-centeredness

in hospital care: A concept analysis based on a literature review. Patient Educ Couns 2016.15. Gorini A, Mazzocco K, Kondylakis H, et al.: A web-based interactive tool to improve breast cancer patient

centredness. Ecancermedicalscience 2016; 10:659.16. Groen WG, Kuijpers W, Oldenburg HS, et al.: Empowerment of Cancer Survivors Through Information Tech-

nology: An Integrative Review. J Med Internet Res 2015; 17:e270.17. Oshima LE, Emanuel EJ: Shared decision making to improve care and reduce costs. N Engl J Med 2013; 368:6-8.18. Christie J, Quinn GP, Malo T, et al.: Cognitive and psychological impact of BRCA genetic counseling in before

and after definitive surgery breast cancer patients. Ann Surg Oncol 2012; 19:4003-4011.19. An introduction to patient decision aids. BMJ 2013; 347:f4147.20. Ardern-Jones A, Kenen R, Eeles R: Too much, too soon? Patients and health professionals’ views concerning the

impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care (Engl ) 2005; 14:272-281.

21. Easton DF, Pharoah PD, Antoniou AC, et al.: Gene-panel sequencing and the prediction of breast-cancer risk. N Engl J Med 2015; 372:2243-2257.

22. Hoberg-Vetti H, Bjorvatn C, Fiane BE, et al.: BRCA1/2 testing in newly diagnosed breast and ovarian cancer patients without prior genetic counselling: the DNA-BONus study. Eur J Hum Genet 2016; 24:881-888.

23. Cortesi L, Razzaboni E, Toss A, et al.: A rapid genetic counselling and testing in newly diagnosed breast cancer is associated with high rate of risk-reducing mastectomy in BRCA1/2-positive Italian women. Ann Oncol 2014; 25:57-63.



141

CHAPTER 7

References1. Van Riel E, Warlam-Rodenhuis CC, Verhoef S, et al.: BRCA testing of breast cancer patients: medical specialists’

referral patterns, knowledge and attitudes to genetic testing. Eur J Cancer Care (Engl) 2010; 19:369-376.2. Meiser B, Tucker K, Friedlander M, et al.: Genetic counselling and testing for inherited gene mutations in newly

diagnosed patients with breast cancer: a review of the existing literature and a proposed research agenda. Breast Cancer Res 2008; 10:216.


4. Wevers MR, Ausems MG, Verhoef S, et al.: Behavioral and psychosocial effects of rapid genetic counseling and testing in newly diagnosed breast cancer patients: Design of a multicenter randomized clinical trial. BMC Cancer 2011; 11:6.

5. Douma KF, Meiser B, Kirk J, et al.: Health professionals’ evaluation of delivering treatment-focused genetic testing to women newly diagnosed with breast cancer. Fam Cancer 2015; 14:265-272.

6. Zilliacus E, Meiser B, Gleeson M, et al.: Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing amongst women recently diagnosed with breast cancer. Support Care Cancer 2012; 20:2949-2958.

7. Watts KJ, Meiser B, Mitchell G, et al.: How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer. BMC Cancer 2012; 12:320.

8. Wevers MR, Aaronson NK, Verhoef S, et al.: Impact of rapid genetic counselling and testing on the decision to undergo immediate or delayed prophylactic mastectomy in newly diagnosed breast cancer patients: findings from a randomised controlled trial. Br J Cancer 2014.

9. Wevers MR, Ausems MG, Verhoef S, et al.: Does rapid genetic counseling and testing in newly diagnosed breast cancer patients cause additional psychosocial distress? results from a randomized clinical trial. Genet Med 2015.

10. The Netherlands foundation for the detection of hereditary tumours (STOET). The Dutch Society of Clinical Genetics (VKGN): “Erfelijke tumoren: richtijnen voor diagnostiek en preventie” 3rd edition, 2005:10–13.

11. Oncoline. http://www.oncoline.nl. Date of access 10-4-200812. Katz SJ, Lantz PM, Janz NK, et al.: Patient involvement in surgery treatment decisions for breast cancer. J Clin

Oncol 2005; 23:5526-5533.13. Butow P, Harrison JD, Choy ET, et al.: Health professional and consumer views on involving breast cancer

patients in the multidisciplinary discussion of their disease and treatment plan. Cancer 2007; 110:1937-1944.14. Castro EM, Van RT, Vanhaecht K, et al.: Patient empowerment, patient participation and patient-centeredness

in hospital care: A concept analysis based on a literature review. Patient Educ Couns 2016.15. Gorini A, Mazzocco K, Kondylakis H, et al.: A web-based interactive tool to improve breast cancer patient

centredness. Ecancermedicalscience 2016; 10:659.16. Groen WG, Kuijpers W, Oldenburg HS, et al.: Empowerment of Cancer Survivors Through Information Tech-

nology: An Integrative Review. J Med Internet Res 2015; 17:e270.17. Oshima LE, Emanuel EJ: Shared decision making to improve care and reduce costs. N Engl J Med 2013; 368:6-8.18. Christie J, Quinn GP, Malo T, et al.: Cognitive and psychological impact of BRCA genetic counseling in before

and after definitive surgery breast cancer patients. Ann Surg Oncol 2012; 19:4003-4011.19. An introduction to patient decision aids. BMJ 2013; 347:f4147.20. Ardern-Jones A, Kenen R, Eeles R: Too much, too soon? Patients and health professionals’ views concerning the

impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care (Engl ) 2005; 14:272-281.

21. Easton DF, Pharoah PD, Antoniou AC, et al.: Gene-panel sequencing and the prediction of breast-cancer risk. N Engl J Med 2015; 372:2243-2257.

22. Hoberg-Vetti H, Bjorvatn C, Fiane BE, et al.: BRCA1/2 testing in newly diagnosed breast and ovarian cancer patients without prior genetic counselling: the DNA-BONus study. Eur J Hum Genet 2016; 24:881-888.

23. Cortesi L, Razzaboni E, Toss A, et al.: A rapid genetic counselling and testing in newly diagnosed breast cancer is associated with high rate of risk-reducing mastectomy in BRCA1/2-positive Italian women. Ann Oncol 2014; 25:57-63.


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