There is an increasing need for board-certified genetic counselors in the United States, says Stephanie A. Cohen, MS, LCGC, so she is looking to nurses to help improve patient access to hereditary cancer risk assessment and genetic testing
At St. Vincent Hospital in Indianapolis, Indiana, where Cohen practices, nurses have begun to collaborate with genetic counselors, implementing screening measures and using telehealth technology to bring genetic services to patients more quickly. In fact, the program was able to quadruple the number of patients they serve with the help of nurse navigators they have trained to be “genetic counselor extenders (GCEs).”
Needs and Requirements
Cohen noted that genetic risk assessment should be available in cancer centers because outcomes related to assessment and testing can change medical management, affect the ability to detect and possibly prevent cancer, identify at-risk family members, save the healthcare system money in the process, and of course, save lives. “There are several standards that require pre- and post-test genetic counseling
,” she said.
Standards from the Commission on Cancer and the National Accreditation Program for Breast Centers are similar and require cancer risk assessment, genetic counseling, and genetic testing to be provided or referred by their accredited institutions. The United States Preventive Services Task Force (USPSTF) recommends that primary care providers screen women who have certain risk factors, and that women with positive screening results should receive genetic counseling and, if indicated after counseling, BRCA testing.
Cohen acknowledged the problem revolves around the increased demand for and availability of genetic tests that has outstripped the number of professionals trained to assess whether patients should actually get them and those trained to administer them.
“Today, there are more than 20 labs that offer genetic cancer testing, there are over 40 different multigene panels that you could consider ordering, and there are more than 80 hereditary cancer genes that you could consider ordering,” Cohen said.
Media attention has increased public awareness, so patients are asking about the tests; however, insurers want patients to get pre-test genetic counseling to contain costs. But Cohen questioned, “How many people are we missing?”
She pointed to a 2017 study published in the Journal of Clinical Oncology
that showed that among women who clearly meet the criteria for genetic testing—women with a history of breast
or ovarian cancer
—only 29% discussed testing, 20.2% were advised to undergo testing, and only 15.3% actually had genetic testing.
St. Vincent—a community hospital in a large metropolitan area that is a part of a large health system including 14 hospitals across the state of Indiana—has 3 board-certified genetic counselors who serve all 14 hospitals. To expand genetic counseling services, the hospital launched a pilot program at 3 sites where the genetic counselors identified nurse navigators to serve as their local contacts to provide limited services as GCEs.
As part of their training, GCEs receive education on cancer genetics and observe genetic counselors They learn how to use the systems to log health histories, order tests online, and review documentation. GCEs then routinely attend web-based, monthly case reviews and the board-certified genetic counselors conduct quarterly random chart reviews.
Cohen said the system worked well, but also acknowledged there were challenges. In particular, training GCEs took a lot of time, and when the GCE left their position, much knowledge, as well as the use of the trainer’s time, was lost. To counter this, the genetic counselors created a training program—a 7-part webinar series, in which each segment is about 10-15 minutes.
As part of the collaborative process, genetic counselors triage prospective patients based on criteria similar to those from the National Comprehensive Cancer Network (NCCN). Patients who who clearly meet criteria and are at increased risk meet with a GCE at their local cancer center.
“GCEs provide patient education, coordinate appropriate testing, arrange for follow-up; they know who all the players are locally, and can make sure we get the proper follow-up for individuals when they need it,” Cohen said.
In an interview with Oncology Nursing News,
Cohen delved deeper into the volume and flow of work. “Over a whole 2 years, we triaged 12,477 surveys (which patients fill out online). One genetic counselor once a week looks through the surveys, spending about 15-20 minutes at a time. The genetic counselor does the triaging. GCEs are responsible for contacting the patient and getting them set up and letting them know whether they will be seeing the GCE or the genetic counselor.”
When it is determined that a patient needs to consult with board-certified genetic counselors directly because of a more complex family history, the GCE can set up a telegenetics session at their local hospital and the patient can meet with the genetic counselor remotely.
“There are too many people that need this type of service and not enough of the certified genetic counselors so what we have tried to put together in our system has allowed us to reach at least 4 times as many people and we feel like we are providing quality care,” Cohen said.
Cohen A. Genetic counselor extenders, telegenetics, and health technology improve access to genetic counseling. Presented at: Association of Community Cancer Centers 35th
National Oncology Conference; October 17-19; Phoenix, AZ.