During the COVID-19 pandemic, in-person provision of cancer genetic counseling and education services was not possible for a prolonged period. This article outlines why such services can continue remotely, despite the disruption of a pandemic, as well as describes the strengths and limitations of remote counseling to individuals and families about their hereditary risk for developing cancer. Considerations for the provision of remote counseling and some of the challenges of telehealth, with potential solutions, are described.
AT A GLANCE
- Remote counseling can be an effective strategy when in-person counseling is not feasible.
- Before implementing remote counseling, a trial run should be scheduled to identify and address issues with technology.
- Remote counseling requires the use of Health Insurance Portability and Accountability Act–compliant technology; some patients will lack the equipment and/or skills to navigate the needed technology.
This year, with the spread of the virus that causes COVID-19, many methods of healthcare delivery changed in a matter of days. The provision of counseling services and education about cancer susceptibility was no exception. Several considerations determined whether cancer genetic counseling services could continue, including the necessity of the services, parameters that needed to be in place to provide care remotely, and strengths and limitations of providing counseling services remotely. The experience of clinicians providing care during the COVID-19 pandemic informs the design of optimal models of care delivery.
Necessity of Services
The provision of cancer genetics education and counseling involves a series of steps. It begins with assessment of personal and family history, followed by counseling about the strengths, limitations, and risks of testing (Hampel, 2016). Once a patient’s genetic sample is retrieved and sent to the laboratory for evaluation, the patient receives results in two to four weeks. Stopping this service during the time required for a pandemic to subside creates a bottleneck in scheduling and long waiting times for an appointment when in-person testing and counseling eventually can be resumed.
Genetic counseling services provided during a pandemic enable patients to obtain information about their risks for developing cancer so that when services are resumed, they have the necessary information to make treatment decisions and can move forward with a treatment plan. For example, a woman with a new diagnosis of breast cancer who learns that she has a germline risk for developing cancer can schedule a bilateral mastectomy without further delay when services are more readily available. For patients already scheduled for genetic counseling and education, following through with their appointments remotely can avoid scheduling issues when pandemic restrictions are lifted.
Implementation of Remote Genetic Counseling Services
Common approaches to providing genetic services via telehealth, sometimes referred to as telegenetics, include counseling via telephone or video. In some geographic regions, telegenetics is routinely used as a means to overcome shortages of credentialed genetics professionals (Buchanan et al., 2016). Counseling via video requires Health Insurance Portability and Accountability Act (HIPAA)–compliant equipment, which is not always readily available (Vrečar et al., 2016).
Counselors and patients may find telephone counseling to be adequate for conveying basic genetic concepts and that it provides enough information for patients to make informed decisions about whether they want to pursue testing (Voils et al., 2018). Videoconferencing may make reading nonverbal cues and body language easier. However, Burgess et al. (2016) found that establishing a patient–provider rapport through remote counseling may be difficult. A study by Solomons et al. (2018) of 68 patients who received counseling via videoconference found that 87% of patients felt their needs were met and 95% stated that it improved accessibility, but 32% would have preferred in-person counseling.
Remote Care Transition During the COVID-19 Pandemic
The COVID-19 pandemic required a rapid transition to remote counseling to continue to provide services, often in less than 48 hours because of government-imposed restrictions and shelter-in-place orders. This transition required informing every patient of the option to reschedule the appointment for a point at several months in the future or to have telephone counseling at the previously scheduled time. When the option of telephone counseling is offered to patients, it is important to explain the limitations of remote counseling (see Figure 1). Patients also should be informed that if they feel uncomfortable or overwhelmed during the telephone counseling session, they have the option to stop the session and instead schedule a future in-person appointment, when available.
On the first day of the test run to determine the feasibility of remote counseling and identify potential barriers, remote counseling was provided via telephone from the genetic counselor’s office. During the session, the counselor was attentive to every component of the service to determine if the remote counseling could be replicated in another location during a shelter-in-place order. Although a telephone and basic laptop are readily available during a remote session, other resources, such as a fax machine, scanner, or printer, may not be accessible. In addition, during in-person counseling sessions, insurance cards can be copied and scanned; this is not the case during a remote counseling session. On the second day of the test run, the counselor provided counseling from her home.
The two-day test run confirmed that direct, immediate, face-to-face communication with support staff who assist with scheduling patients and handling administrative issues would not be possible but that communication could be accomplished through emails, text messages, and telephone calls. Another challenge revealed during the test run was that telephone counseling does not allow the counselor to see the patient’s nonverbal cues that might signal confusion or emotional turmoil.
In addition, similar to in-person counseling, patients counseled via remote counseling may have questions about their diagnosis and possible surgery and treatment. Many patients who took part in remote counseling during the pandemic, particularly those who had been newly diagnosed, expressed that they were unsure of where to turn for information and how to reach a provider. Patients who take part in remote counseling also may ask more treatment questions than usual.
Another challenge of remote counseling is obtaining and collecting an adequate sample for DNA extraction. During in-person counseling, the specimen is obtained, labeled, packaged, and shipped by the provider. After remote counseling, a test is ordered, and a kit using buccal or saliva specimens is sent to the patient’s home with a prepaid label for expedited shipping to return the specimen to the laboratory. Therefore, during remote counseling, the patient must be educated on how to collect the sample, label it, and package it for shipping. Some patients may find this stressful. Even the prepaid shipping process may cause stress for patients, particularly if they are unfamiliar with it.
Prior to any genetic counseling appointment, patients need to gather information regarding cancer diagnoses in their maternal and paternal first-, second-, and third-degree relatives. Patients often complete this on a paper form or through an online link that facilitates the pedigree construction. Either way, the information needs to be confirmed for accuracy during the counseling session, with modifications made, as necessary, to establish the patient’s pedigree. The pedigree is an effective means of helping patients to understand the risks and concepts of genetic transmission. However, with remote genetic counseling via telephone, patients cannot readily see the pedigree.
The patient will likely receive genetic testing results via telephone. Although this may also occur following in-person counseling, it is particularly important to talk to patients who receive remote counseling about this plan for disclosure so that they can choose an optimal time and setting in which to receive their results (Mahon, 2020).
Remote counseling requires many technologies. The counselor might not have access to a fax machine, copier, or scanner. Offices that traditionally receive fax transmissions can have them sent to an email address, which not only saves paper but also enables efficient filing of the fax for future use. Virtual private network technology enables the counselor to access all software just as if they were in the office and allows institutional information technology staff remote access to troubleshoot any computer problems.
Physical distance from support staff can be addressed by having shared access to a HIPAA-compliant drive to store documents. Calendars and schedules can be color coded to see which patients have been contacted and who has opted for remote counseling, as well as to prevent duplication of efforts. The use of email and text messages to communicate with support staff is helpful for questions that can be answered simply.
Sharing results with referring providers can be difficult without access to a fax machine. However, most are willing to accept results through a HIPAA-compliant email instead of a fax.
Sharing information electronically with patients can be challenging. At the time the appointment is made, it is important to ask the patient for an email address to facilitate communication; the patient should be told that the email address will be used only for that purpose. When telephones are being answered remotely, email is often a more efficient way for the patient to access administrative or professional help.
However, some patients are not able to or do not use email or are not comfortable receiving results electronically. Sometimes a relative can assist them. The provider should have access to a printer, postage stamps, and stationery to send results to those patients who cannot access email.
Obtaining a copy of the patient’s insurance card may also be a problem. With instruction, some patients are able to take a picture of the card with their cell phone and send it via email. Patients who do not have an insurance card on file and cannot send it electronically can share their member and group numbers with the support staff scheduling the appointment, and it may be possible for the laboratory to access the patient’s insurance information that way. To help reduce the stress associated with technology, it is important to assure patients that efforts will be made to work through issues; even if these issues make the process take a little bit longer, there are usually solutions, and they will not be an obstacle to moving forward with testing.
Because of a lack of nonverbal cues in remote counseling, it may be difficult to ascertain if the patient has understood content; adding a teach-back moment may help. For example, prior to ordering the genetic test, it may be helpful to ask patients to summarize, in their own words, what they think is going to happen and to ask if they have any questions of their own. Other suggested questions to ask patients include the following:
• Can you state the general risks, benefits, and limitations of testing, and how might testing might affect your care and potentially the care of other family members?
• Can you state the next steps, such as what you should do when the test kit arrives?
• Can you describe how you will receive results and how long it will take?
Another strategy to support learning is emailing the patient a copy of the pedigree; this allows the patient to visually see how many relatives have a diagnosis of malignancy and how testing might clarify their risk. In addition, some of the brochures provided by testing companies and other patient education materials are available electronically; it may be possible to send these to the patient via email to reinforce information.
Following remote counseling, the counselor can send an email (which can be templated) to the patient that summarizes what will happen next, as well as remind the patient that email is the best means of contact. This email can let patients know that if questions arise concerning specimen collection once the test kit arrives, assistance via telephone is available to walk them through the process of correctly collecting the specimen and packaging it; this may help to make the experience less stressful and overwhelming.
Even under normal circumstances, the genetic testing process can be stressful for patients and families. Acknowledging this during remote counseling is important; the counselor should also convey to the patient that they should record any questions and can email the counselor if they would like additional counseling and education. Patients need to be supported during results disclosure and should understand that they have the option to return for in-person follow-up, when available, particularly if they have a positive test result.
During a pandemic, usual methods of contact with healthcare providers are altered. Patients may be unsure about where to obtain information and support. Being aware of this added stress, acknowledging it, and answering questions or directing the patient to where they can get this information or access services is important and can make a difference in how the patient copes with the diagnosis, the associated stressors of the diagnosis, and the pandemic.
Family members frequently accompany patients to in-person counseling sessions, acting as a form of support and also receiving genetic education. With remote counseling, particularly when a shelter-in-place order is in effect, having other family members on the telephone call can help with reinforcement of the information after the session. After receiving permission from the patient, three- or four-way telephone calls may be set up to include other family members isolated because of the pandemic. Although doing so likely increases the length of the session, this practice enables family members to simultaneously hear the provided information. Afterward, the family members can discuss this information among themselves, with the patient requesting clarification, as needed.
It is important to establish boundaries with remote counseling. Many patients request counseling on weekends, evenings, and other times that it would not normally be available. Although members of the counseling team may be working from home under a shelter-in-place order, they do not need to work excessively outside of their usual schedule. Establishing a schedule for when the patient can access care is reasonable.
Similarly, it is important for patients to know how to best contact the counselor or administrative assistant. The office telephone message should clearly state that staff are working remotely and that they check the office telephone messages a few times each day, so that patients do not expect an immediate response.
The COVID-19 pandemic quickly changed the delivery of oncology health care. Figure 2 provides a list of considerations for switching to remote counseling. This quick transition period also provides an opportunity to review policies and processes and consider whether remote counseling is the most efficient and effective means of delivering genetic services. Continuing to provide genetic services, albeit remotely, is important to help keep patients on their treatment schedule. Remote delivery of genetic counseling services has limitations and creates challenges, but it is an acceptable alternative when in-patient counseling is prohibitive.
The author gratefully acknowledges Jennifer Bussen, administrative assistant in the Division of Hematology/Oncology at Saint Louis University in Missouri, for her thoughtful comments in the preparation of this manuscript and for her creativity, support, and diligence in quickly transitioning to remote counseling.
About the Author(s)
Suzanne M. Mahon, DNSc, RN, AOCN®, AGN-BC, is a professor in the Department of Internal Medicine in the Division of Hematology/Oncology and in the School of Nursing at Saint Louis University in Missouri. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. Mahon can be reached at firstname.lastname@example.org, with copy to CJONEditor@ons.org.
Buchanan, A.H., Rahm, A.K., & Williams, J.L. (2016). Alternate service delivery models in cancer genetic counseling: A mini-review. Frontiers in Oncology, 6, 120. https://doi.org/10.3389/fonc.2016.00120
Burgess, K.R., Carmany, E.P., & Trepanier, A.M. (2016). A comparison of telephone genetic counseling and in-person genetic counseling from the genetic counselor’s perspective. Journal of Genetic Counseling, 25(1), 112–126. https://doi.org/10.1007/s10897-015-9848-2
Cohen, S.A., Huziak, R.C., Gustafson, S., & Grubs, R.E. (2016). Analysis of advantages, limitations, and barriers of genetic counseling service delivery models. Journal of Genetic Counseling, 25(5), 1010–1018. https://doi.org/10.1007/s10897-016-9932-2
Hampel, H. (2016). Genetic counseling and cascade genetic testing in Lynch syndrome. Familial Cancer, 15(3), 423–427. https://doi.org/10.1007/s10689-016-9893-5
Mahon, S.M. (2020). Considerations for the telephone disclosure of genetic test results to patients with cancer. Clinical Journal of Oncology Nursing, 24(1), 8. https://doi.org/10.1188/20.CJON.8
Solomons, N.M., Lamb, A.E., Lucas, F.L., McDonald, E.F., & Miesfeldt, S. (2018). Examination of the patient-focused impact of cancer telegenetics among a rural population: Comparison with traditional in-person services. Telemedicine and e-Health, 24(2), 130–138. https://doi.org/10.1089/tmj.2017.0073
Stoll, K., Kubendran, S., & Cohen, S.A. (2018). The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 178(1), 24–37. https://doi.org/10.1002/ajmg.c.31602
Terry, A.B., Wylie, A., Raspa, M., Vogel, B., Sanghavi, K., Djurdjinovic, L., . . . Bodurtha, J. (2019). Clinical models of telehealth in genetics: A regional telegenetics landscape. Journal of Genetic Counseling, 28(3), 673–691. https://doi.org/10.1002/jgc4.1088
Voils, C.I., Venne, V.L., Weidenbacher, H., Sperber, N., & Datta, S. (2018). Comparison of telephone and televideo modes for delivery of genetic counseling: A randomized trial. Journal of Genetic Counseling, 27(2), 339–348. https://doi.org/10.1007/s10897-017-0189-1
Vrečar, I., Hristovski, D., & Peterlin, B. (2016). Telegenetics: An update on availability and use of telemedicine in clinical genetics service. Journal of Medical Systems, 41(2), 21. https://doi.org/10.1007/s10916-016-0666-3
Zierhut, H.A., MacFarlane, I.M., Ahmed, Z., & Davies, J. (2018). Genetic counselors’ experiences and interest in telegenetics and remote counseling. Journal of Genetic Counseling, 27(2), 329–338. https://doi.org/10.1007/s10897-017-0200-x