Anne Taylor, Oncology Roundtable
The 2012 Commission on Cancer (CoC) Standards include a new requirement for cancer programs to provide genetic testing and counseling services to patients. (See Standard 2.3 Risk Assessment and Genetic Counseling, page 68 in the 2012 CoC Standards.) To meet the standard, some programs have chosen to outsource to a genetic counseling provider network or vendor.
To better understand how these services work, we spoke with David Nixon, CEO of InformedDNA, who provided more details about how his national provider network enables cancer programs to meet the new Commission on Cancer (CoC) standard for risk assessment and genetic counseling and to provide a highly valued service to patients.
Over-the-phone consultation with board-certified genetics counselors
InformedDNA employs a team of specialty-trained, board-certified genetics counselors with a minimum of three-eight years of experience. They can provide over-the-phone pre- and post-test counseling to patients anywhere in the US. In addition to meeting the 2012 CoC standards, InformedDNA services enable cancer centers to achieve NAPBC genetics counseling standards. Further, InformedDNA genetic counselors are experienced in and qualified for genetic counseling for all types of inherited cancer risk.
Genetics counselor performs pre-test counseling
During pre-test counseling, the counselor collects information about the patient’s family history and the patient’s health, recommends the appropriate genetic tests, and educates patients about the testing and counseling process. The appointment typically lasts 60-90 minutes.
Genetics counselor follows-up with patient and physician
In follow up, the counselor notifies the patient’s physician about the recommended tests. The patient’s physician then orders the tests (unless they have been ordered previously). Once the results are ready, the genetic counselor has a second appointment with the patient, this time focused on explaining the test results and providing recommendations for follow up care and lifestyle modifications. In addition to providing recommendations during the phone appointment, the counselor also provides a written report including suggested steps for the patient and his or her physicians. The report may include recommendations such as chemoprevention, additional screening, or prophylactic surgery, following national professional society guidelines.
Potential benefits of partnership with InformedDNA
Appropriate use of genetic testing
Nixon noted that genetic testing is often performed incorrectly. Brierly et al. (2010) assessed common errors in genetic testing when a genetic counselor was not involved. The authors identified three common errors, including:
- Wrong genetic test ordered
- Genetic test results misinterpreted by physician
- Inadequate genetic counseling
Negative outcomes included unnecessary prophylactic surgery, psychosocial distress, and false reassurance resulting in inappropriate medical management.
The Cleveland Clinic recently tracked the number of BRCA and microarray tests that were incorrectly ordered by a medical professional without a background in genetics. The frequency of incorrect orders, and the monetary losses associated with these orders, prompted the institution to restructure its genetic testing program and involve more genetics professionals in the ordering process ( see more here).
While in some cases physicians order incorrect tests or too many tests, in other cases they do not use genetic testing enough. With rapid advances in genomics, it’s difficult for physicians to keep up with new guidelines for testing. Nixon commented that even though every newly diagnosed metastatic colon cancer patient should be tested for KRAS genetic status (40% of these patients will not respond to erbitux depending on KRAS status), the test is still widely underutilized.
According to Nixon, InformedDNA genetic counselors are aware of the most up-to-date guidelines and, when necessary, will prompt physicians to consider new tests.
Time from referral to appointment is an important factor to consider given the impact of genetic test results on patients’ treatment choices. According to Nixon, the average wait time for a traditional, on-site genetic counseling appointment is several weeks. InformedDNA, he says, can schedule a patient within 10 days – and within four days if surgical treatment is pending.
Nixon reported that one NCI-designated cancer program was losing $250K per year on genetic counseling due to insufficient volumes, high overhead costs, and poor reimbursement. With InformedDNA, programs pay a volume-based $1,500 – 3,000 monthly retainer fee and InformedDNA bills the patient’s insurance directly.
Genetic risk assessment is an important piece of multidisciplinary cancer care and in addition to providing counseling for patients, the genetic counselors are also available to providers by phone, as well as to participate in tumor boards, grand rounds, and other program presentations.
Research studies validate over-the-phone genetic counseling
A 2007 paper by Jenkins et al. evaluated over-the-phone BRCA 1/2 test result disclosure in comparison to traditional, in-person disclosure. They found no difference in patients’ anxiety and general well-being measures between phone and in-person counseling. 77% of patients were satisfied with their assigned method of counseling; however, greater costs were associated with in-person counseling.
Peshkin et al. (2008) reported that telephone counseling for BRCA1/2 testing allowed for comprehensive service delivery and paralleled face-to-face counseling. Further, Baumanis et al. (2009) found that, when given an option of face-to-face or telphone counseling for BRCA1/2 results, patients reported significantly higher satisfaction with telephone counseling.
Stay tuned to Oncology Rounds, where later this week we will report on one provider's experiences working with InformedDNA genetic counselors.