Acceptability and Future Considerations for Telegenetic Counseling After the COVID Pandemic: Interviews with Genetic Counselors, Clinicians, and Patients

Abstract

While telegenetic counseling has increased substantially since the start of the COVID-19 pandemic, previous studies reported concerns around building rapport, nonverbal communication, and the patient-counselor relationship. This qualitative evaluation elicited feedback from genetic counselors, referring clinicians, and patients from a single healthcare organization to understand the user-driven reasons for overall satisfaction and experience. We conducted 22 in-depth, semi-structured interviews with participants from all 3 groups between February 2022 and February 2023. Interview recordings were transcribed and analyzed using a pragmatic thematic approach. Participants across all groups felt the style and content of the genetic counseling visit lent itself perfectly to telegenetics specifically because of no physical exam component. Most patient and counselor participants expressed having the genetic counseling over phone or video had no impact on the patient-counselor relationship or the amount of trust and emotional connection they were able to achieve remotely. Preference for visit type can be influenced by in-person masking requirements impeding full facial expressions or expressing strong emotions over phone. All respondents expressed strong support for all modalities going forward. Counselors with broad experience across platforms should be the focus of future recruitment as should patient education around the nature of the genetic counseling visit and the accuracy of various testing options. Telegenetic programs should consider perspectives from all 3 groups to ensure that specific needs of each are addressed.

Introduction

The demand for genetic counseling has increased as more is known about the link between genes and certain health predispositions.^1,2 However, the number of certified genetic counselors working in direct patient care has lagged behind demand, creating a shortage that could persist for many years.^{1,3 -5} Furthermore, genetic counselors and services are unevenly distributed throughout the country, leading to even greater disparities in access. ³ Virtual genetic counseling (or “telegenetics”),^6,7 a genetic counseling visit conducted either over phone or via videoconferencing, has long been seen as a way to help improve the reach of genetic counseling services, ⁸ but widespread adoption was hampered in part by difficulties with billing and reimbursement.^{9 -11} The COVID-19 pandemic led to a rapid shift in making telehealth care more widespread as reimbursement structures were eased for remote visits. ¹²

Previous studies on telegenetics found high satisfaction among patients and counselors alike,^{13 -17} with multiple studies showing similar levels of patient satisfaction between those receiving genetic counseling in-person compared to remotely.^15,18,19 Patient-reported benefits of telegenetics include reduced travel and wait times, flexibility, and convenience.^{7,14,17,20,21} Genetic counselors have similarly reported advantages of convenience, flexibility, and reduced commute times.^11,17,22 Some telegenetic challenges include remote saliva sample collection for video visits (samples not returned, poor sample quality, lost or mislabeled samples),^23,24 billing and reimbursement barriers,^9,19 technical difficulties (connection speed, video resolution), establishing rapport, and meeting psychosocial needs. ²²

At the Palo Alto Medical Foundation (PAMF), a healthcare delivery system in the San Francisco Bay Area in northern California, sites began offering video visits for cancer genetic counseling in May 2021, complementing in-person and phone-based visits. The organization wanted to understand more about the acceptability and appropriateness of cancer telegenetic counseling (phone and video), both for the future of the cancer genetic counseling program and to consider expansion into other genetic counseling areas (eg, cardiogenetics, neurogenetics). Previous studies, including those done more recently during COVID-19, have primarily used brief surveys to assess counseling program satisfaction with video visits among patients, counselors, or both;^14,15,20 far fewer have used in-depth interviews to elucidate the user-driven reasons for overall satisfaction with telegenetics and by modality (ie, video vs. phone).^7,22 To our knowledge, this is the first project to compare patient, counselor, and referring clinician perspectives within the same healthcare system to understand experience, benefits, and challenges after implementing telegenetics workflows and the impacts of COVID-19 on the provision of genetic counseling. Given that evidence suggests patients’ desire for telehealth options will continue into the future, ²⁵ it is important to understand from multiple perspectives how to build a telegenetics program that seamlessly transitions from a temporary, pandemic-specific solution to a long-term component of patient care.

Methods

We examined the implementation and delivery of virtual genetic counseling services at PAMF, an affiliate of Sutter Health. In addition to in-person cancer genetic counseling, PAMF began offering some phone counseling starting in 2018, broadly expanded across PAMF in June/July 2020, and video counseling beginning May 2021.

Our evaluation team was all female and multi-disciplinary: 4 health services researchers (CS, MM, NS, SYL), an oncologist (MdeB), and the genetic counseling program manager (SC) (author initials).

All genetic counselors at PAMF were invited to participate in interviews. We focused on primary care and referring clinicians across PAMF with the highest referral rates to cancer genetic counseling as they had the most experience with the program. Eligible patients with a genetic counseling visit between 2017 and 2022 were selected from counselors who completed interviews. While patients in the recruitment pool included those with in-person and telegenetics visits, we oversampled for patients with a telegenetic visit to ensure sufficient perspectives to understand this new component. Recruitment was done via email with an initial letter and up to 2 follow-up emails to 8 counselors, 51 providers, and 140 patients and all who responded were interviewed 1 time.

After meeting with the clinical leaders of the genetic counseling program, the research team developed a semi-structured interview guide to qualitatively understand experiences with genetic counseling, including telegenetic counseling where applicable, workflows for counseling (eg, referral process, scheduling, choice of counseling mode), quality of counseling services, benefits and challenges of telegenetics, and recommendations for successful telegenetic counseling in the future (see Supplemental Materials).

Each interview lasted between 30 and 45 min and were conducted by MM or NS between February 2022-February 2023. Both interviewers are Project Managers trained in qualitative research and practical thematic analysis ²⁶ who had previous personal experience with genetic counseling and were interested in further understanding the experiences surrounding genetic counseling at the organization. They did not personally interview any participants they already knew. The Sutter Health Institutional Review Board (SHIRB) reviewed all materials, and the work was deemed to be quality improvement. One-on-one interviews were conducted over the telephone. All participants were given a brief description about the purpose of the evaluation, reasons for conducting the interview, and that their participation was voluntary and confidential. Verbal consent was obtained before proceeding and recording the interview in accordance with quality improvement practices within our organization. Interviews were audio recorded and transcribed for accuracy and interviewers took notes as needed during the interviews to help facilitate the conversation. Patients were given a $15 e-gift card as compensation for their time.

Data were managed and analyzed in Dedoose (version 9.0). Data analysis was conducted by MM, NS, and CS and they followed the 3 steps of practical thematic analysis—reading, coding, and theming. ²⁶ First, MM and NS read through all transcripts to collaboratively create and refine a codebook deductively based on the interview questions and inductively from emergent concepts in the interviews. The codebook was then reviewed, agreed upon, and finalized among all 3 qualitative team members (MM, NS, CS). MM and NS did the initial coding on all transcripts, resolving any disagreements through discussion to reach consensus. The entire team, including SYL, SC, and MdeB, met to review and discuss the coding. Resulting themes were derived from the codes and validated based on contextualization of results and the evaluation question. Interviewees were not invited to review transcripts or develop themes. Demographic characteristics for participants not captured during the interview were obtained from administrative data. For clinicians and patients, MM, NS, and CS regularly discussed concepts throughout the reading, coding, and theming process and chose to stop recruitment at saturation when there were no new main themes emerging from interviews and the codebook was stable.^26,27 We followed COREQ guidelines as recommended for reporting practical thematic analysis of qualitative research (see Supplemental Materials). ²⁸

Results

We conducted a total of 22 interviews—7 clinicians, 4 genetic counselors, and 11 patients. Clinician participants were mostly female, specialists, and had practiced a mean of 13.9 years at the organization; counselors were evenly split between male and female and had been at Sutter a mean of 6.75 years. Patients were primarily non-Hispanic white females between 40 and 55 years old (Table 1). Of the 11 patients, 2 had an in-person counseling visit and 9 had a telegenetics visit—4 by phone, 4 over video, and one could not recall whether it was phone or video.

Table 1.

Characteristics of Participants.

Characteristics	Clinicians (n = 7)	Genetic Counselors (n = 4)	Patients (n = 11)
Age
Mean age, years	51	43.5	46
Median age, years	51	46	49
Age range, years	38-68	30-52	26-68
Sex
Female	5 (71.4%)	2 (50%)	8 (72.7%)
Male	2 (28.6%)	2 (50%)	3 (27.3%)
Race/ethnicity
Non-Hispanic White	5 (71.4%)	*	8 (72.7%)
Non-Hispanic Asian	2 (28.6%)	*	3 (27.3%)
Specialty
Oncology	2 (28.6%)	N/A	N/A
Primary care (FM/IM)	3 (42.9%)	N/A	N/A
Surgery	2 (28.6%)	N/A	N/A
Years at sutter
Mean years	13.9	6.9	N/A
Median years	14	5.5	N/A
Range	5-19	1.5-15	N/A

^*Did not report to maintain participant confidentiality.

Patient, Counselor, and Provider Reactions to Telegenetic Counseling

All patients, clinicians, and counselors stated that they supported the incorporation of telegenetics into the cancer genetic counselor program and expressed a desire to see video, phone, and in-person visits continue to be offered moving forward: “It is a huge convenience factor for me to be able to have these conversations and these kinds of appointments over the phone, so I would be excited if these kinds of things could stick around in their virtual or telephonic state” (patient). Reasons for keeping telegenetics reported by all 3 groups fell into 4 main themes.

Genetic Counseling Is a Visit Type Well-Suited for Telehealth

Patients, counselors, and clinicians frequently mentioned that genetic counseling lends itself well to telehealth, given that there is no physical exam required and it is “more like an interview.” Even for those who may have preferred an in-person visit but opted for a telegenetics visit because of the COVID-19 pandemic, patients reported that there was no “difference to [their] experience” when doing it remotely. Counselors noted telegenetics has been “accepted pretty readily from everyone” and they have not experienced any patients complaining that they “wish we did this in-person. . .especially because what we do is really just a conversation.” Clinicians, who also had to move many of their visits virtually during the pandemic, echoed patients’ and counselors’ feelings, noting that counseling visits were ideally suited for telehealth: “I never heard from a patient that they’d prefer to see a counselor in person. They’d probably rather do it as telecommunication because it’s mostly discussion, there’s no exam involved” (clinician).

Benefits of Convenience, Ease, and Flexibility with Telegenetic Counseling

Convenience, ease, and flexibility were mentioned as benefits of telegenetic counseling from counselors and patients, and participants often returned to the importance of these benefits throughout the interviews. The absence of travel time with telegenetics allowed patients to pursue genetic counseling when they otherwise may have put it off or skipped it altogether because of distance for an in-person visit. As some patients moved as a result of the COVID-19 pandemic, telegenetics provided the opportunity to continue receiving services from Sutter Health: “I’ve since moved from [City] to a new location. . .having to drive 20 miles or more, that’s a heavy burden, so I’m perfectly happy with telephone counseling” (patient).

A telegenetic option meant patients did not need to worry about time off from work, childcare, travel time or costs.

At the time of scheduling, I just had a newborn. . .and I was just back at work. So just having that flexibility. . .you don’t have a lot of time or you don’t want to drive down to [city] and leave your kid far away in daycare. . .(patient)

And for counselors, the added time enabled them to add additional patient visits during the day or “squeez[e] in” a visit: “[I can] offer it from wherever I am on the go” (counselor).

Similar Patient-Counselor Relationship with Telegenetics as In-Person Genetic Counseling

Patient participants reported a high level of trust with their genetic counselor, regardless of visit type, and the majority felt that telegenetics did not impact the connection or emotional support they received from their counselor. Patients felt counselors were able to express empathy, build rapport, and establish trust all during a telegenetics session:

I’ll tell you what was great. . .She was just amazing. . .She took the time to answer every single question, was not at all rushed, was not at all interested in getting us off the phone to get to the next call or anything like that (patient).

However, patients also pointed out that the relationship with a genetic counselor is more short-term (1 or 2 conversations), unlike the long-term connection with a primary care provider, and thus there was less need for a deep connection: “I never got the impression that this was a long-term relationship that you’re building” (patient).

Patients noted that a genetic counseling visit can be stressful, especially when related to cancer, and being in the comfort of one’s own home where they could be more relaxed was seen as a benefit. One patient said, “I’m in my home, I’m in my comfort zone,” and another expressed “I could just sit home. . .and pet my cat.” It also allowed for other family members to be included, with 1 patient noting, “I had my wife here.”

Improvements to Clinic Workflow and System-Level Savings

For referring clinicians, the change to telegenetics made the referral process easier because they no longer needed to find the closest genetic counseling location and could instead leave that to the scheduler based on patient preference for type of visit:

I feel really busy, so to look at all the locations that are the next available. . .that’s not something that is in my workflow. I just want to put a referral in the computer and get out of their chart as quickly as possible (clinician).

Clinicians felt that the move to telegenetics was beneficial to the healthcare system with improved resource use as “you don’t need office space to put the patient for the visit” and fewer staffing requirements “because you don’t need somebody to room the patient.” The large footprint of the healthcare system, including many rural areas, improved the reach of genetic counseling for patients, a major benefit noted by all counselors. Counselors generally felt that the move toward telegenetics improved team communication as they now had an easily accessible “virtual front desk” that ensured patients were completing their pre-visit questionnaires and answering patient questions—“if the patients call with a concern, they’re calling back to a centralized place. . .I actually have more office staff even though I really never see them” (counselor).

Considerations for Continuing Telegenetics

While the desire to continue to offer telegenetic counseling was high, there were 2 areas that participants mentioned should be considered for future programs.

Competing factors impacting preference for in-person, video, or phone visits

Compared to in-person visits, many counselors and patients both acknowledged that it can be harder to focus during telegenetic counseling. One counselor felt that “there have been a couple of times where. . .I was a little concerned that maybe the patient wasn’t focused in, that here were some distractions and they were able to multitask” when conducting the visit over phone. Patients also felt that it may be harder to absorb complex genetic concepts virtually: “I think it depends on the person and their ability to focus and absorb [virtually]. I kind of grew up being in tech, but I could see some people it would be harder, like my mom is in her 80’s. . .I could see her not paying that much attention.” One patient commented that they likely would have asked more clarifying questions during the results disclosure had it been an in-person visit, while one counselor noted that they believed patients who had an initial in-person counseling visit had fewer questions on the results:

I think the in-person patients seem to have less questions because one of the things I do when I’m meeting with somebody in-person is I write out the three result types and I draw out the significance of each whereas over the phone or video I’m just explaining it.

Being able to pick up on visual and nonverbal communication, such as nervous twitches, can provide more immediate feedback about a patient’s comprehension, interpretation of information, and connection with the patient, and this was mentioned by counselors and referring clinicians as a benefit to in-person and video visits compared to phone visits:

A lot of genetic counseling is really almost like a therapeutic session where we’re taking a lot of cues from their body language. . .video has allowed us to have an in-between of still being able to see the patient and see their facial reactions, any sort of nervous twitches. . .compared to sort of flying blind over telephone (counselor).

However, in-person counseling was impacted during the COVID-19 pandemic by the in-person masking requirement and multiple times counselors and clinicians mentioned how they felt masks made telegenetics a more appealing option. One counselor expressed that “there is something about wearing a mask that sort of has changed just the dynamic” in that there is the potential to miss many non-verbal cues by not being able to see the full face. As a clinician pointed out, “if it’s on video, people don’t have to wear masks, and that can be more comfortable for people. . .and of course it can be helpful to be able to read people’s facial expressions.”

Some counselors noted that phone visits carry their own unique set of benefits, particularly increased anonymity, allowing for some patients to feel more comfortable expressing intense emotions: “patients feel like they can cry and be emotional and be a little bit less preoccupied with how they look on camera” (counselor). Another counselor preferred phone because they felt there was more awkwardness and formality over video, whereas on the phone the focus could just be on the conversation: “I think phone and in-person I tend to do better counseling, psychosocial counseling. I think video is a little bit different. . .there’s always a certain level of awkwardness and formality [with video visits].” Many patients similarly liked that they did not need to worry about their appearance or surroundings with phone visits—“I don’t mind over the phone. . . I didn’t have to put warm clothes on. I could just sit home in my pajamas.”

At our organization, after the lab releases results from an outside laboratory, counselors typically call the patient or send a message via the online patient portal. Patients we spoke with were generally comfortable with this approach. However, for “bad” results, some patients expressed that they would want a face-to-face discussion with the counselor, either in-person or via video. According to 1 patient, they received the call about their results when having breakfast with a friend at a local restaurant and “I went outside and everything that I had hoped would be different, answers were all coming up yeses and positives. . .I know that I was in shock. . .And I think that at that point, that’s when you really kind of need that empathetic approach and just comfort, some other way in which you don’t just keep instilling fear.”

COVID-19 specific impacts

Participants from all 3 groups highlighted some difficulties with telegenetic counseling specific to the COVID-19 pandemic in addition to what was mentioned earlier about masking for in-person counseling. Safety from infection was an important reported factor among patients, particularly cancer patients and those actively undergoing treatments, and virtual visits were acknowledged as offering protection from COVID-19. As 1 patient pointed out, “if they are immunocompromised, I think that’s a great option for them. . .because of the pandemic, I think doing it virtually is a wonderful option.” For many of these patients, COVID-19 proved a barrier to genetic counseling even with telegenetics because they were not willing to come in to do a blood draw, so they opted not to do counseling. As 1 counselor noted, “a lot of patients were like, ‘I’m not eve(n) going to do counseling because I only want to do a blood draw and I’m not willing to go to a lab to do a blood draw.’”

Discussion

In this exploration, we engaged in in-depth interviews from patients, genetic counselors, and referring clinicians within a single healthcare organization to understand the acceptability of telegenetic counseling, shed light on the benefits of telegenetics, and consider factors involved in the continuing and future provision of telegenetic services during and after the COVID-19 pandemic. All participants overwhelmingly supported the incorporation of telegenetics and wanted video, phone, and in-person options to continue to be offered moving forward, echoing findings from Allison et al. ²⁹ We found this willingness to continue with telegenetics was in part the result of participants feeling that style and content of the genetic counseling visit lent itself perfectly to a remote format. However, participants nevertheless highlighted considerations moving forward such as the myriad factors that impact choosing in-person versus video versus phone for initial counseling and results reporting and COVID-19 specific impacts that may continue indefinitely.

That our participants expressed support of telegenetics aligns with other studies on telehealth broadly and telegenetics specifically that also found high rates of satisfaction.^{13 -17} Patient and counselor participants reported similar known benefits of ease, convenience, and flexibility.^11,17,22 Referring providers and counselors noted two additional system-level benefits to clinic workflows: an improved referral process and healthcare system savings from virtual care because of reduced in-clinic space needs and staffing requirements. Given that each visit type has demonstrated merits, referring clinicians may feel confident deferring to genetic counselors and patients regarding preferred visit type for a specific patient. While we were not able to quantify any savings in this study, as many healthcare systems continue to rebound from the financial impact of the COVID-19 pandemic, these savings could potentially aid in financial recovery and make systems more resilient to future disruptions. ³⁰ Importantly, patients and counselors in our analysis did not report any impact on the patient-counselor relationship as a result of telegenetics, unlike some previous work where counselors were concerned about building rapport and “losing something essential” when conducting the visit virtually.^{17,22,31 -34} This may in part be due to our patient participants recognizing the short-term nature of the patient-counselor interaction, which may be generally different than the longer-term relationship with a primary care provider, and the ability of the genetic counselors in our organization to establish sufficient trust and empathy regardless of modality for the limited course of genetic counseling. Going forward, organizations looking to improve their telegenetics program should consider educating patients on the nature of the visit and setting expectations up front to improve the patient-counselor relationship and overall acceptability. As a result of these findings, and with the expectation that telegenetics will continue at our organization, the genetic counseling department has intentionally recruited counselors with experience across all visit modalities.

While previous studies have found a strong preference for in-person and video over phone visits, in part related to the concerns over rapport and the ability to read body language,^{7,17,22,32,35} many of our participants highlighted that there are other potential nuances that may impact personal preference for in-person, video, or phone visits. Patient preference for in-person versus virtual might vary based on factors both medical and social, including flu season, the start of the school year, or before and after popular sporting games or long weekends. Additionally, masking requirements were mentioned as negating many of the benefits of in-person visits by removing the ability of counselors to read facial cues. This is an important consideration and could potentially continue to impact genetic counseling because many healthcare systems are leaving masking requirements in place or enacting them seasonally to protect patients and staff from respiratory illnesses, including cold and flu. ³⁶ On the other hand, many participants noted benefits unique to a phone-only visit, such as increased privacy, ease, geographic coverage of services, ³⁷ and access when a counselor or patient is unable to use any video options. Of note, the ability to more easily express emotion was only mentioned in the context of phone visits. With COVID-19 allowing many individuals the option of remote work, and thus possible relocation out of the healthcare system’s core catchment area, telegenetics allows for patient and counselors to continue their relationship with the healthcare system even over a wider geographic footprint, a trend that is expected to continue into the future. ³⁸

However, for the reporting of results, while most patients found the current process acceptable of a lab email with a counselor phone or email follow-up, for 1 patient whose results came back with “bad” results indicating genetic variants, they were unhappy with receiving results over the phone. Baumanis et al. found that patients who were given a choice of how they wanted to receive results were more satisfied with their results session; thus, counselors may want to include time during the counseling visit to discuss how patients want to receive their results, whether via a phone or face-to-face format (in-person or video) and if that decision depends on what the tests find. ³⁹ To further complement the convenience of telegenetics, as well as further protect those who are immunocompromised, counselors should offer genetic testing via saliva sampling at home for those who are hesitant to come onsite for a blood draw and who do not require urgent testing. All of this may require providing additional information for counselors on the benefits and limitations of all 3 modalities so that they can investigate patient preference, assure patients of the accuracy of saliva testing, and increase comfort of telephone disclosure for positive results. ⁴⁰ Taken together, our results suggest complexity surrounding which modality may be preferred by certain patients and counselors, and that there may be specific circumstances where a certain type of visit is preferred and this warrants further investigation. Furthermore, while telegenetics has been seen as an avenue to reduce disparities by allowing broader access, ¹⁴ offering only video options with the required technical needs (eg, wi-fi, video camera) may actually increase disparities. ⁴¹ Given that for many patients, having a genetic counseling visit by phone is acceptable, sometimes preferred, and with fewer device requirements, it may be appropriate for individual counselors and health systems to offer this patient-centered option as part of any telegenetics programs.

Limitations

We recognize limitations of this analysis. All interviewed patients had only 1 visit with the cancer genetic counselor (with 1 visit type), so we were unable to obtain direct comparisons with other modalities (e.g., in-person vs video) based on personal experience. However, as genetic counseling often only involves a single counseling visit, this represents the typical experience of patients. All participants came from 1 healthcare system in Northern California, which may not be representative of other healthcare systems or regions of the country. Nevertheless, PAMF serves a diverse patient population living in rural, urban, and suburban areas. Certain areas contain patients with high technological literacy, which could potentially have masked additional challenges other populations may face, particularly with video visits. As we chose to focus on clinicians with more experience with the telegenetic program, we may not have captured all clinician perspectives across the system. All patients were English speaking and therefore we could not explore the optimal visits type for those with a need for medical interpreter services. This should be an area of future research, as well as other social, cultural, and financial disparities around telegenetic services. There could be response bias in that those participants who had high satisfaction with their genetic counseling visit or counselor might have been more likely to participate.

Conclusion

While the COVID-19 pandemic greatly accelerated the expansion of telegenetics in part because of altered payment structures, our interview findings from patients, clinicians, and counselors suggest that health systems should offer in-person, video, and phone options to provide a more patient-centric approach to genetic counseling. The preference for visit type was influenced by many factors, including the recognition of the short-term nature of patient-counselor relationship in genetic counseling, the need to wear a mask for some in-person visits, the desire for individuals to stay with the healthcare system even after moving away, and the ability to privately express emotion. Future telegenetics programs should consider perspectives from patients, clinicians, and counselors alike to ensure that the specific needs of each group are addressed in light of the prolonged changes from COVID-19.