Assessing the Status of BRCA Testing and the Challenges Faced by Cancer Care Teams in the Community. Summary of Survey Findings April 2018

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1 Assessing the Status of BRCA Testing and the Challenges Faced by Cancer Care Teams in the Community Summary of Survey Findings April 2018

2 In March 2018, the Association of Community Cancer Centers (ACCC) surveyed 95 community oncology practitioners around the United States to assess the status of BRCA testing and the challenges faced by cancer care teams. Following is a summary of survey data collected. [Editor s note: Due to rounding, figures presented in this report may not add to 10.] Respondents by Type of Practice 8 76% % 4% 5% 6% 4% Hospital-based outpatient cancer center Freestanding cancer center Physician-owned practice Hospital-employed physician practice Integrated health system Other Only 7% of respondents reported routinely ordering BRCA testing for all of their early-stage breast cancer patients, while the others reported ordering BRCA testing for patients who were younger than age 50 when diagnosed (74%), had a family history of either BRCA mutation (85%) or breast/ovarian cancer (86%), or had been diagnosed with triple negative breast cancer (75%). Summary of BRCA Testing Survey Findings 1

3 For which of the following patients with early breast cancer do you routinely order BRCA mutation testing? % 85% 86% 75% % All patients All patients younger than 50 when originally diagnosed Patients with a family Patients with a family history of BRCA history of breast mutation and/or ovarian cancer Patients with triple negative breast cancer For patients with metastatic breast cancer, only 14% of respondents reported routinely ordering BRCA mutation testing for all patients, while others reported ordering testing for patients who were younger than age 50 when diagnosed (64%), had a family history of BRCA mutation (77%) or breast/ovarian cancer (79%), or had been diagnosed with triple negative breast cancer (65%). Only 4 of practitioners reported routinely ordering BRCA testing for patients who had not been previously tested for BRCA mutation, and who had progressed beyond several lines of therapy. For which of the following patients with metastatic breast cancer do you routinely order BRCA mutation testing? Select all that apply % All patients 64% All patients younger than 50 when originally diagnosed 77% 79% Patients with a family history of BRCA mutation Patients with a family history of breast and/or ovarian cancer 65% Patients with triple negative breast cancer 4 Patients who were previously not tested for BRCA mutation and have progressed beyond several lines of therapies 2 Association of Community Cancer Centers

4 The majority of respondents (82%) reported that 5 or fewer of early breast cancer patients receiving care at their facility have ever had germline BRCA mutation testing, whereas 87% reported the same with metastatic patients. Genetic counselors most often order the mutation test (37%), followed by medical oncologists (29%), surgeons (22%), and nursing professionals (7%). What is your best estimate of the percentage of patients, managed and treated at your center in the past three months, who have ever had germline BRCA mutation testing? % 57% 23% 13% 15% 18% 2% 7% 1-25% 26-5 >5 Early Metastatic When queried on BRCA testing guidelines utilization, many reported following one or more guidelines. Ninety-five percent (95%) of respondents indicated that they follow guidelines developed by the National Comprehensive Cancer Network (NCCN), 31% follow American Society of Clinical Oncology (ASCO) guidelines, 17% follow American Society of Breast Surgeons (ASBS) guidelines, and 8% employ a protocol developed by their institution/multidisciplinary team for ordering BRCA mutation testing. Three percent (3%) reported using no specific guidelines for BRCA mutation testing. National Comprehensive Cancer Network (NCCN) 95% American Society of Breast Surgeons (ASBS) 17% American Society of Clinical Oncology (ASCO) 31% A protocol developed by your institution/multidisciplinary team 8% No specific guidelines 3% Summary of BRCA Testing Survey Findings 3

5 While 15% of respondents reported no access to or routine use of a genetic counselor, most centers reported utilizing a genetic counselor either onsite (69%) or via tele-counseling (16%). Six percent (6%) reported referring patients to the closest available genetic counselor at another institution. Do you have access to, and routinely utilize, a genetic counselor? Yes, I routinely access genetic counseling through tele-counseling 16% Yes, I routinely use a genetic counselor at my center 69% No, I do not have access to a genetic counselor at my site 15% When available, genetic counseling consults are most often ordered by the medical oncologist (47%), surgeon (37%), or nurse navigator/nurse practitioner (8%), and the BRCA mutation test is ordered by the genetic counselor (37%), medical oncologist (29%), surgeon (22%), and nurse navigator/nurse practitioner/nurse certified in genetics (7%). At most practices that do not have a genetic counselor, a physician, nurse navigator, or nurse practitioner educates the patient about BRCA mutations before ordering the test, as well as after the test results come in. 4 Association of Community Cancer Centers

6 5 45% 4 35% 3 25% 2 15% 1 5% Who most often refers the patient for a genetic counseling appointment at your center? 47% 37% 2% 6% 1% 6% Who most often initiaties the order for the BRCA mutation test at your center? 4 35% 3 29% 37% 25% 2 22% 15% 1 5% Medical oncologist Surgeon 5% Nurse practitioner Oncology nurse 1% Nurse navigator Genetic counselor 1% Nurse certified in genetics 4% Other Summary of BRCA Testing Survey Findings 5

7 Among centers that reported providing access to a genetic counselor, 75% average 2 weeks or less wait time to get an appointment with a counselor, 12% average 2-3 weeks, and 13% average longer than 3 weeks. Reported turnaround for receipt of BRCA germline test results from the lab varied, with 7 of respondents indicating an average time of less than 2 weeks, 27% waiting 2-3 weeks, and 4% reporting more than a one week wait. What is the average time taken to... 66% % 44% 4% 31% 12% 13% <7 days 7-14 days days >21 days 4% Appt. with Genetic Counselor Time to Receive Results For patients with early breast cancer, 85% of centers reported that they usually order the expanded sequencing panel covering multiple genes; 15% of centers reported ordering germline BRCA 1 and 2 testing. For patients with metastatic breast cancer, 8 of centers reported that they usually order the expanded sequencing panel covering multiple genes; 2 of centers reported ordering germline BRCA 1 and What germline BRCA test do you usually order for your patients? 15% 2 Germline BRCA 1 and 2 85% 8 Expanded sequencing panel covering multiple genes Early Metastatic 6 Association of Community Cancer Centers

8 Many clinicians (82%) reported that having somatic testing results on metastatic patients does not influence their decision to order germline testing; 18% would order germline testing only if a BRCA mutation were present in somatic testing results. Does having somatic testing results (if done) on metastatic patients influence your decision to order germline testing? % % 13% 0 No, I would order germline testing anyway Yes, I would order only if a BRCA mutation present in somatic testing results No, I don t order germline testing in metastatic patients Survey respondents reported the following barriers to routine BRCA mutation testing: Challenges with respect to identification of patients who meet criteria 21% Systems-based challenges related to ordering tests and communicating test results 12% (e.g., not part of our standard protocol) Reimbursement for testing 32% Reimbursement for counseling 21% Access to genetic counselors 28% Turnaround time for BRCA mutation testing 27% Unclear clinical benefit of BRCA mutation testing 6% Patient-related barriers (e.g., patient fear, patient refusal, concerns for future 59% insurability following genetic testing) Other 1 Summary of BRCA Testing Survey Findings 7

9 Most of the practitioners polled (95%) are at least somewhat familiar with the mechanism of action of PARP inhibitors in patients harboring BRCA1 or BRCA2 mutations: How familiar are you with the mechanism of action of PARP inhibitors in patients harboring BRCA1 and BRCA2 mutations? 5% 18% 45% 32% Extremely Familiar Very Familiar Somewhat Familiar Not familiar at all The majority of respondents (67%) indicated that their institution prescribes PARP inhibitors to patients with metastatic breast cancer with BRCA mutations: Does your practice prescribe PARP inhibitors to patients with metastatic breast cancer with BRCA mutations? 17% 16% 67% Yes No Other 8 Association of Community Cancer Centers

10 Thirty percent (3) of the respondents are participating in clinical trials with PARP inhibitors in the early breast cancer setting; 38% are participating in the metastatic breast cancer setting: Are you participating in clinical trials with PARP inhibitors? % % Yes No Early Metastatic Survey respondents report that they have referred their patients to other centers for clinical trials with PARP inhibitors in both the early breast cancer setting (31%) and the metastatic breast cancer setting (31%). Have you referred your patients to other centers for clinical trials with PARP inhibitors? % 69% % 31% Yes Early Breast Cancer Setting No Metastatic Breast Cancer Setting Summary of BRCA Testing Survey Findings 9

11 Summary In a survey of community oncology practitioners conducted by ACCC to assess the status of BRCA mutation testing for patients with breast cancer, more than 8 of respondents reported that 5 or fewer of their patients with early or metastatic breast cancer care have ever had germline BRCA mutation testing. Barriers to BRCA mutation testing include patient-related barriers (e.g., patient fear, patient refusal, concerns for future insurability following genetic testing) and provider/institutional challenges (e.g., identification of patients who meet criteria, reimbursement for testing and counseling, access to genetic counselors, turnaround time for BRCA mutation testing, systems-based challenges related to ordering tests and communicating test results, and unclear about clinical benefits of testing). Significant practice variations were also identified among the respondents in terms of the patients they selected for routine BRCA mutation testing. While the majority of respondents indicated that they follow the guidelines developed by the National Comprehensive Cancer Network (NCCN) or the American Society of Clinical Oncology (ASCO) for ordering BRCA mutation testing, 3% reported using no specific guidelines. More than 8 of practitioners report that they usually order expanded sequencing panel covering multiple genes for patients with both early and metastatic breast cancer. Many clinicians (82%) report that having somatic testing results on metastatic patients does not influence their decision to order germline testing; 18% would order germline testing only if a BRCA mutation were present in somatic testing results. While most respondents indicated that genetic counselors most often ordered BRCA mutation testing at their centers, 16% of practitioners did not routinely utilize a genetic counselor. In terms of familiarity with targeted treatment options for patients harboring BRCA1 or BRCA2 mutations, most of the community practitioners who responded to the survey were at least somewhat familiar with the mechanism of action for PARP inhibitors in patients with metastatic breast cancer harboring BRCA mutations. Many respondents (67%) have prescribed PARP inhibitors to patients with BRCA-mutated metastatic breast cancer. A third of the respondents indicated that they have referred their patients to clinical trials with PARP inhibitors in the early or metastatic breast cancer setting. 10 Association of Community Cancer Centers

12 1801 Research Blvd., Suite 400 Rockville, Maryland accc-cancer.org A publication from the ACCC education program, Quality Improvement in Breast Cancer Through BRCA Testing. Learn more at accc-cancer.org/projects/brca/overview. The Association of Community Cancer Centers (ACCC) is the leading education and advocacy organization for the multidisciplinary cancer team. ACCC is a powerful network of 25,000 cancer care professionals from 2,100 hospitals and practices nationwide. ACCC is recognized as the premier provider of resources for the entire oncology care team. For more information visit accc-cancer.org or call Follow us on Facebook, Twitter, and LinkedIn, and read our blog, ACCCBuzz Association of Community Cancer Centers. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means without written permission. This publication is a benefit of ACCC membership.

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