As genetic and genomic testing become more common—and complex—in cancer diagnosis and treatment decisions, more efficient and accessible ways of providing comprehensive genetic care are needed.
In their article in the February 2019 issue of the Clinical Journal of Oncology Nursing, Pierle and Mahon discussed the findings from their literature review, specifically pertaining to genetics care services across the cancer continuum, patient and system barriers to accessing care, new service delivery models, and oncology nurses’ role in providing comprehensive cancer genetics care services.
Patient Criteria for Genetics Counseling
The first step of comprehensive genetics care is identifying which patients may have a hereditary susceptibility for increased risk of cancer, Pierle and Mahon explained. See the sidebar for patient and family signs of hereditary cancer.
Once appropriate patients are identified, referral for genetic evaluation is important, Pierle and Mahon said. Genetic testing results will help patients and their families make decisions about cancer screening and prevention strategies, including risk-reduction surgery or chemoprevention, if warranted.
Use of multigene panel testing has increased the need for patients to consult with genetics professionals to ensure proper tests are ordered and that patients and their families fully understand the results. Genetics counselors can help patients understand which of the many syndromes they might be at highest risk for, as well as how to interpret finding a variant of unknown clinical significance.
Pierle and Mahon’s review found data reporting that in 2017, 55% of oncology practices provided referrals to genetics professionals, 24% have at least one genetics counselor onsite, 4% contract with an academic institution, and 12% do not use genetics counselors. Increasing patient access to genetics counseling is important because evidence suggests that it is associated with better adherence to evidence-based care guidelines, more detailed education about genetic testing results, better-coordinated care for other at-risk family members, and cost savings from ordering the correct genetic tests.
Barriers to Accessing Genetics Care
Patient-related barriers that may prevent them from seeking genetics counseling include costs (e.g., copayments, provider fees), inconvenient access (e.g., travel distance, lack of time off work, childcare), and fear of insurance or employment discrimination. Patients and families may not understand the value of genetics counseling, either, Pierle and Mahon said.
System barriers include primary care providers’ lack of knowledge about genetics testing, incomplete cancer risk assessments, and electronic health records that don’t allow for three-generation pedigrees. Some practices may not be able to schedule genetics counseling at times convenient for patients and families. And because reimbursement is variable based on payers, some institutions may be unable or unwilling to develop, sustain, or grow cancer genetics programs.
Different Delivery Models May Be a Solution
Comprehensive cancer genetics care can be provided under three common models: in-person counseling, telephone counseling, and telegenetics (e.g., videoconferencing).
In-person counseling has been the conventional approach and is usually delivered before and after genetics testing has been completed. According to Pierle and Mahon, benefits include providing patients and families with the freedom to ask questions and enabling the counselor to build a face-to face rapport. However, some of the barriers are intensive time requirements and lack of enough qualified providers.
Telephone counseling has emerged as an alternative that bypasses some of the barriers of in-person counseling. It can be provided anywhere, requires no travel time for patients or providers, facilitates faster scheduling, and enables patients and providers to have more timely discussions about results. On the other hand, some of the barriers include providers’ inability to read patients’ behavior or nonverbal cues, as well as the logistics of signing consent forms or collecting blood samples or specimens.
An even newer option is telegenetics, which uses videoconferencing delivery for genetics counseling. It offers the same benefits as telephone counseling, but the visual interaction overcomes some of the limits of telephone-only counseling. However, especially for older patients, the technology requirements may be a new barrier.
Finally, Pierle and Mahon explained that some practices are using a combination of the three approaches. In the United States, many begin with an in-person initial appointment but present the test results by phone to facilitate faster decision making and treatment. However, a Dutch model flips the approach with pretest phone counseling followed by in-person discussion of the test findings.
Still more options include group counseling for patients with similar conditions (e.g., several family members for a known familial mutation, several unrelated patients at risk for a similar genetic syndrome), which has an added benefit of facilitating social support from others in the group, and tandem referral, where pretest counseling is conducted by another healthcare provider (e.g., advanced practice RN) and patients meet with a genetics counselor to discuss results.
What This Means for Oncology Nurses
Pierle and Mahon said that oncology nurses can facilitate conversations between patients and genetics counselors to ensure that patients’ questions or concerns are being answered. Additionally, all nurses should be confident in the following list of genetics competencies from the American Nurses Association and International Society of Nurses in Genetics:
- Identify risk factors for hereditary syndromes.
- Collect and document a three-generation pedigree.
- Identify and facilitate appropriate patients for referral to genetics risk assessment and counseling.
- Understand the genetic testing, risk assessment, and counseling process.
- Provide support for patients and families.
For more information about genetics service delivery models and the opportunity to earn 0.5 CNE contact hours and ILNA points (free for ONS members), refer to the full article by Pierle and Mahon.
Questions regarding the information presented in this article should be directed to the Clinical Journal of Oncology Nursing editor at CJONEditor@ons.org. Photocopying of this article for educational purposes and group discussion is permitted.