Alice Kerber, MN, APRN, ACNS-BC, AOCN, APNG
In a role that’s already multifaceted and growing ever more so, many oncology nurses and navigators are facing a new layer of complexity in their everyday practice: directing patients and their families to the right resources so that they can make informed decisions about their genetic risk, whether testing is warranted, and if so, what to do about the results.
The availability and breadth of genetic testing options have expanded exponentially since the US Supreme Court’s landmark decision last year to open up the testing market to competition. Awareness of genetic and familial risk factors has also soared in the wake of decisions by the actress Angelina Jolie and other high-profile figures to undergo prophylactic mastectomies because of their known genetic predispositions. Together, these trends have put cancer genetics center stage, posing one more challenge for today’s busy oncology practitioners who sometimes may feel like “they are expected to know everything, even though it’s impossible to know everything,” explained Alice Kerber, MN, APRN, ACNS-BC, AOCN, APNG. Many nurses feel pressure from “how quickly the information is coming, and how much of it is coming; it’s such a rapidly changing field, and it’s hard.”
Kerber is the oncology and genetics nurse specialist with Georgia CORE—the Center for Oncology Research and Education, a nonprofit organization working to improve the quality of cancer care in Georgia. She explained that multiple organizations have issued genetics guidelines for practitioners, including the NCCN, whose guidelines, she noted, “a lot of us use all the time”: “The beauty: these guidelines are updated all the time. The burden: they are updated all the time.”
“It’s a very complicated arena,” concurred Sue Friedman, DVM, who founded the organization FORCE (Facing Our Risk of Cancer Empowered) in 1999 following her own breast cancer diagnosis at the age of 33. Shocked that her healthcare team didn’t alert her to the possibility of being at high risk and disappointed at having to make critical treatment decisions while unaware of her mutation, she established FORCE so others could benefit from her experience.
The organization she leads works to fill the information void for individuals and families with hereditary breast and ovarian cancer (HBOC) and provides resources to help them to advocate for themselves.
Friedman described the explosion in genetic testing options following the Supreme Court’s decision as “astonishing,” noting that while costs of testing have come down, the number and variety of tests have gone up.
“It’s hard even for the experts to keep track of who is offering which test, how they’re reporting it, what panels, what genes, which ones are clinically actionable and which ones really are more, ‘Yes, this is interesting,’ but it doesn’t guide treatment any more than family history,” Friedman said. “It has made it more challenging for providers who don’t have specific training in cancer genetics to really figure out what is the best path for the patient.”
“We want to make sure that people are not making healthcare decisions based on incomplete information,” Friedman stressed.
Providing Guidance, Identifying Resources
To further that goal, experts agree that nurses need to acquire knowledge and foster relationships with genetic counselors and other local and digital resources, an approach that aligns with the American College of Surgeons Commission on Cancer 2012 Standard 2.3 which states that “cancer risk assessment, genetic counseling, and testing services be provided to patients either on site or by referral, by a qualified genetics professional.”
Abundant resources are available online and through professional societies (Box) for nurses to improve their knowledge base and to support their patients who may be at high risk.
Emily Beard, RN, OCN, CBCN, is coordinator for the Women’s Oncology Program at Northside Hospital Cancer Center in Atlanta, where she specializes in breast and gynecologic cancer services, a role that includes facilitating referrals to the hospital’s Hereditary Cancer Program. The program currently employs three full-time genetic counselors and will be expanding, she said. “When treatment decisions are pending, we work to get patients into the program as quickly as possible.”
American Nurses Association (ANA): www.nursingworld.org/genetics.
American Nurses Credentialing Center (ANCC): www.nursecredentialing.org/AdvancedGenetics. Credential awarded: AGN-BC. Eligible applicants submit an online portfolio of evidence to document their knowledge and skills.
Breast Cancer Genetics Referral Screening Tool (B-RST): www.breastcancergenescreen.org.
City of Hope—Cancer Genetics Education Program: http://www.cityofhope.org/cancer-genetics-education-program.
Facing Our Risk of Cancer Empowered (FORCE): www.facingourrisk.org. Provides support, education, and programs to help those facing hereditary breast and ovarian cancer know their healthcare options and make informed decisions.
Genetic Alliance: www.geneticalliance.org/publications.
Global Genetics and Genomics Community: http://g-3-c.org/en/resources/.
International Society of Nurses in Genetics (ISONG): www.isong.org/.
Lynch Syndrome International: www.lynchcancers.com. Offers quick guides for professionals to acquaint them with basic knowledge of Lynch syndrome.
My Family Health Portrait Tool: www.hhs.gov/familyhistory. A web-based tool from the US Surgeon General whereby users can organize their family history information and print it out for their healthcare provider.
National Coalition for Health Professional Education in Genetics (NCHPEG): www.nchpeg.org.
National Comprehensive Cancer Network (NCCN): www.nccn.org. Guidelines for detection, prevention, and risk reduction.
National Society of Genetic Counselors (NSGC): www.nsgc.org/. Among its resources is a Find a Genetic Counselor directory searchable by state and city.
Oncology Nursing Society (ONS): www2.ons.org/ClinicalResources/Genetics.
Most practices, especially those not affiliated with larger hospitals, will not have a genetic program on site, however. “As much as possible, reach out to the genetics experts in your area, to enable your patients to get the best information, and this may mean reaching out to someone at a different institution,” advised Friedman. The National Society of Genetic Counselors (NSGC), for example, maintains a searchable directory to help locate certified genetics counselors based on location.
Kerber, a member of NSGC, said she works very collaboratively with the genetic counselors in Georgia to help keep up with the demand for counseling fueled by greater awareness as well as regulations from major health insurers that require counseling before authorizing reimbursement for testing: “We just have to work together, because there are not enough of us.” And when access to counseling is a challenge, both Kerber and Friedman agreed that telephone counseling is a viable option. Kerber said that although “face-to-face is always better,” when that option is not available, organizations such as InformedDNA, which provides the advice of independent, certified genetic counselors via telephone and internet technology, can help to meet the demand and offer the added advantage of not being affiliated with one particular testing laboratory.
“Not everyone is going to want to have the counseling by telephone, but there is now some good emerging evidence that it is equivalent,” Friedman noted. “Why not at least offer it to patients?” She added that some specialties like ophthalmology are not amenable to a “telemedicine” approach, but taking a pedigree, getting a good history, looking at the insurance issues, can be done remotely and improve access to the services. “We have to be careful that we don't let access issues keep patients from having the opportunity to speak with a genetics professional, especially as more and more insurers are covering the cost for telephone counseling.”
More Than Mastectomy
Another important role for nurses and navigators is to stress with patients and families that to pursue testing does not mean prophylactic surgery will necessarily be the next step. Friedman said that she has seen a misperception by some that “the only reason to have testing is if one is considering prophylactic surgery, and that is simply not true,” she emphasized. “There are other healthcare decisions or services that someone will want to consider, armed with the knowledge that they are high risk.”
Some of the problem is media-driven, she acknowledged.
“It is a lot more headline-grabbing to report on a celebrity having a prophylactic mastectomy than the fact that they’re getting increased MRI screening. That’s what people see, so someone who might benefit from increased surveillance may decide not to undergo testing because they don’t want to remove their breasts.
I think that with our messaging, we need to be clear that there are other options available,” Friedman stressed. Misinformation is a problem, concurred Beard. “I think a lot of people don’t understand what we mean when we talk about genetics.” She recalled a patient who was very well educated who insisted, “No, I’ve had genetic testing,” but it turned out that what she thought was genetic testing was actually a genomic profile. “There are issues with the nomenclature.”
“And now in genetics, we have all this new information, such as panel testing, large rearrangement testing, that wasn’t available even 5, 6 years ago. Women who were tested then who had a family history but didn’t come up with the BRCA mutation in that initial testing may have a false sense of security: ‘I’ve taken care of that, I’ve been tested, I don’t need to think about this again,’ when in reality, they may need to think about new testing that’s available. Obviously, our priority is to get the word out to those who have never been tested, but even among those who have been tested, there are still opportunities for more follow-up and surveillance.”
One idea Beard said that she is interested in developing at her institution is a high-risk clinic model to follow patients over time. “We know that if they’re at risk of developing cancer because of a hereditary mutation, they need to be followed closely, and there’s also so much that we don’t know. There are these families that we all have seen where nothing showed up on the genetic test, but clearly there is something going on because there are multiple generations of cancer in young adults or multiple incidences of the same type of cancer.”
Following patients over time to inform future research is the goal of a new initiative FORCE is spearheading under the auspices of PCORnet, the National Patient-Centered Outcomes Clinical Research Network with funding under the Affordable Care Act. The goal of PCORnet, Friedman explained, "is to be able to link electronic health records and patient-reported outcomes together for about 70 million Americans, which will allow us to conduct research with numbers that has never before been possible.”
The Nurse’s Role in Genetics
Family History—identify patients with increased genetic risk
Educate—provide basic genetic information to patients and families
Develop Collegial Relationships—refer to credentialed genetics professionals for counselling
Personalize—tailor surveillance and management with genetic information
Ripple Effect—recognize psychosocial aspects of genetic testing and diagnosis and offer support
Confidentiality—protect client genetic information
Expand Knowledge—through continuing education in genetics and genomics
The ABOUT Network (www.AboutNetwork. Org) is focused on HBOC and is part of PCORnet’s network of research networks. “Our goal is to get at least 10,000 to 15,000 people enrolled in this registry,” said Friedman, “so that we can start looking at the long-term patient-reported outcomes of people who are affected by hereditary cancer to find out things like what happens when people choose surgery, what happens when people choose surveillance, what is the quality of life like,” and use that information to guide future research that will underpin the development of new cancer genetic guidelines in those areas where currently none exist. For example, said Friedman, is there a benefit to removing your uterus and what impact does this have on quality of life? Do women who choose mastectomy have better outcomes than those who choose surveillance?
“We don’t really have answers to these questions for the high-risk population, and we hope to provide guidance for healthcare decision-making,” Friedman continued. Many individuals receive their care in the community or rural setting and thus may not have access to a registry.
Healthcare providers are encouraged to spread the word to their patients about the advantages of joining ABOUT, including receiving information about clinical trials for which they are qualified. FORCE has downloadable materials on its website which practitioners can share with patients who want to learn more about the program.
Expanding Your Own Knowledge
In an arena as rapidly changing as genetics, continuing education is essential. Kerber serves as one of the co-chairs for professional practice for the International Society of Nurses in Genetics (ISONG) which has been working with the American Nurses Association to develop scope and standards of practice for nurses in this field. She is also one of just 40 nurses worldwide and two in Georgia who hold the current advanced practice nurse-genetics (APNG) credential.
The credentialing function of the Genetic Nursing Credentialing Commission, under whose auspices she received her certification, will now be carried out by the American Nurses Credentialing Center (ANCC). ANCC will be awarding the advanced genetics nurse, board-certified credential (AGN-BC), and began accepting portfolios for the AGN-BC December 5.
Kerber added that nurses who already have their GCN credential should contact the ANCC and advocate that it be part of their new genetic credentialing process for nurses. She explained that ANCC has credentialing for many levels of practitioners, from generalist to advanced practice. “We need both. Nurses need to have knowledge about this, and they need support.”
Beard, who counts Kerber as one of her mentors, has a longstanding interest in cancer genetics and is considering pursuing formal certification in the future. In her prior work as a breast health navigator, she participated in educational workshops on genetics, worked closely with a medical oncologist who had a special interest in genetics, and she is a member of the ONS Genetics Special Interest Group. ONS offers online courses in genetics to assist nurses wanting to improve their knowledge.
Whether they are pursuing a specialty genetics credential or simply want to keep up with the ever-changing arena of cancer genetics, Friedman suggested that nurses tap into the expertise of the professional societies. “I would encourage oncology nursing professionals to educate themselves as much as possible, and to get that education from professional societies, rather than just taking information provided by the labs.” One of the benefits of a professional society, she continued, is the knowledge that professionals have met competency requirements and obtained the required continuing education.
Supporting Patients Where They Are
While awareness of the importance of testing has certainly grown, there are some patients who meet criteria who should be getting referred but are not, said Friedman. For example, anyone diagnosed with breast cancer aged 50 years or younger meets national testing guidelines, yet a lot of young breast cancer survivors are not accessing genetics services. Similarly, patients with invasive ovarian cancer meet national guidelines for counseling and testing, but clearly they are not all being referred. “There is awareness, but not always knowledge. There is a gap there,” said Friedman.
Beard’s advice to clinicians new to this world is “to really pay attention to the details,” in the individual’s history by asking about and noticing patterns of multiple generations having cancer as well as those diagnosed at a relatively young age, even if it’s not one of the “hallmark” cancers typically associated with a genetic component. She added that especially for newly diagnosed patients younger than age 50, “you really have to advocate for them to get to a genetic counselor. If there isn’t someone at your center, you need to develop those resources in the community, so they can be seen quickly,” because this can influence treatment decisions.
Nurses should not be daunted by the challenges that accompany the ever-changing landscape of cancer genetics and remember that nurses “have always done counseling,” stressed Kerber. “That is part of our scope of practice.”
She noted the importance of understanding that for patients, dealing with their cancer diagnosis is foremost on their minds. “For the person who is not ready to be tested, the best thing you can do is to listen.” Consider the type of learner they are, offer them information that they can take home, Kerber suggested, and be sure to commend them for the steps they have already taken to look after their health.
“When I talk to patients and families, it’s important to remind them that cancer has a number of causes, and it’s nobody’s fault.” Her best advice for practitioners in this area: “You have to meet patients and their loved ones where they are.”