Traditionally, cancer genetic counseling and testing has been provided during an in-person appointment with an experienced provider. This model includes pre- and post-test counseling and generally is offered only to individuals who meet specific criteria suspicious for hereditary cancer. While comprehensive, this model is very time intensive, is limited in how many patients can be accommodated and results in a significant wait time for appointments. In recent years, there has been an increasing demand for cancer genetic counseling and testing both before and at the time of a cancer diagnosis as more genes associated with hereditary cancer have been discovered and as testing results directly influence treatment.
While access, time, and patient cost barriers likely contribute to disparities in both uptake and outcomes of genetic services, one significant barrier to genetic counseling and testing is the limited workforce of genetic providers. Since genetic counselors are generally located in academic and urban centers, access to in-person genetic services often requires patients to travel long distances. These barriers cause many patients to proceed with testing without a genetic provider or not to proceed with testing at all. However, genetic testing without genetic providers has been associated with inappropriate testing and overtesting, which could lead to increased health care costs. In addition, because of the lack of reimbursement for genetic counseling services overall, partially resulting from lack of recognition by the Centers for Medicare and Medicaid Services and partially due to the difficulty in being credentialed by private health insurance companies, access to highly trained and qualified board-certified genetic counselors remains a challenge.
As a result, alternative and innovative models for providing cancer genetic counseling and genetic testing, leveraging technology, have been explored in an attempt to improve efficiency and access1,2. Three primary models have emerged.
Telephone Genetic Counseling
Telephone counseling involves genetic counseling provided by telephone, with no video component. One of the benefits of this model is convenience. The limitation is the lack of face-to face communication and the inability to maintain visual cues. When compared to in-person genetic counseling, two large multicenter randomized studies found that telephone genetic counseling is not inferior3,4. Furthermore, one of the trials also noted a cost benefit of telephone genetic counseling by comparing estimates of patient, clinician, testing, and overhead costs3.
Telegenetic counseling allows for remote visits utilizing a video conferencing platform. Unlike with telephone counseling, telegenetic counseling allows for face-to-face communication. The benefits of this service delivery model include reduced travel time and travel costs for traveling genetic counselors, more efficient use of staff time, and greater flexibility and availability in scheduling patients. One of the challenges of this model is the cost of the equipment and of the platform as well as the inability to provide in-person emotional support. One study, however, demonstrated telegenetic counseling to be a cost-effective alternative to outreach genetic counseling by comparing the total cost of telegenetic counseling (service, telegenetic set-up and support) to the total cost of outreach genetic counseling (service, travel time, and mileage)5. Furthermore, qualitative analyses suggest that overall patients are satisfied with telegenetic counseling as a service delivery model6.
Group Genetic Counseling
Group genetic counseling involves an educational group session, which includes pre-test counseling components, typically followed by brief individual sessions to assess personal and family histories as well as address specific questions. The primary benefit of this model is the ability to counsel a large number of patients simultaneously. There is; however, concern about the effect of a group dynamic on a patient’s privacy and/or decision-making. Overall, several studies have reported high levels of patient satisfaction with group genetic counseling7. Moreover, in studies providing direct comparisons to traditional genetic counseling, significant time saving was reported for group genetic counseling7.
Undoubtedly, it is necessary to improve access to genetic counseling and testing as the demand for such services continue to increase. And while alternative models of genetic counseling and testing are unlikely to be as comprehensive as the traditional genetic counseling model, offering such models allows for increased access while still maintaining overall satisfaction. Despite these reassuring results, it remains important to recognize that there is no “one size fits all” approach that will suit every patient, provider, or institution.
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1Next-generation service delivery: A scoping review of patient outcomes associated with alternative models of genetic counseling and genetic testing for hereditary cancer. McCuaig JM, Armel SR, Care M, et al. Cancers, 10:435, 2018.
2Genetic counseling and testing in a community setting: Quality, access, and efficiency. Cohen SA, Bradbury A, Henderson V, et al. ASCO Educational Book: e34-e44, 2019.
3Randomized noninferiority trial of telephone versus in-person genetic counseling for hereditary breast and ovarian cancer. Schwartz MD, Valdimarsdottir HB, Peshkin BN, et al. Journal of Clinical Oncology, 32:618-626, 2014.
4Randomized noninferiority trial of telephone delivery of BRCA1/2 genetic counseling compared with in-person counseling: 1-year follow-up. Kinney AY, Steffen LE, Brumback BH et al. Journal of Clinical Oncology, 34:2914-2924, 2016.
5Randomized trial of telegenetics vs. in-person cancer genetic counseling: cost, patient satisfaction and attendance. Buchanan AH, Datta SK, Skinner CS, et al. Journal of Genetic Counseling, 24:961-970, 2015.
6Women’s experience of telehealth cancer genetic counseling. Zilliacus EM, Meiser B, Lobb EA, et al. Journal of Genetic Counseling, 19:463-472, 2010.
7Patient Outcomes associated with group and individual genetic counseling formats. Rothwell E, Kohlmann W, Jasperson K, et al. Familial Cancer, 11:97-106, 2012.