Experiences from the epicenter: Professional impact of the COVID‐19 pandemic on genetic counselors in New York

Abstract

The COVID‐19 pandemic disrupted the delivery of healthcare services, including genetic counseling. This study assessed the professional impact of the pandemic on genetic counselors (GCs) and evaluated how genetics service delivery models changed in New York State (NYS). One hundred sixty‐five NYS GCs participated in an anonymous survey. Clinic structure, telegenetics (video and/or telephone consultations) use and acceptability, and professional practices before and during the pandemic were compared. The most frequently reported consultation type shifted from in‐person only (49%) before the pandemic to telegenetics only (39%) during. Most were satisfied with video (93.1%) and telephone (81.4%) telegenetics. Additionally, 93.5% of participants expressed a desire to continue using telegenetics after the pandemic resolves. Common obstacles included difficulties coordinating sample collection (60.2%) and obtaining written consent for testing (57.6%). Billing methods for consultations during the pandemic did not change significantly. Participants were asked about NYS's lack of licensure, which restricts billing options. Most felt that genetic counseling licensure would benefit the profession (92.6%), the public (88.5%), and their institution/company (74.5%). This study provides insight into the effects of the rapid adoption of telegenetics and can guide future discussions about best practices for its use even after the health crisis resolves.

‘Steep learning curves’ to ‘Smooth Sailing’: A reappraisal of telegenetics amidst the COVID‐19 pandemic

“…Like Pagliazzi's Italian report on telegenetics amidst the pandemic, we found that the forced shift to telegenetics enabled providers to appreciate the benefits of virtual genetic counseling. In particular, our data corroborated and detailed the previously observed impact of telegenetics on barriers (Bergstorm et al., 2020; Pereira et al., 2020). Though previous research spoke generally about the dissolution of geographic barriers and time saved for patients via remote care, our detailed qualitative data highlight the myriad ways in which telegenetics may mitigate barriers to care.…”

“…Early research conducted on genetic counseling and the COVID‐19 pandemic largely supports Mahon's hypotheses that telegenetics increases challenges with respect to specimen collection while reducing geographic barriers and enhancing family member participation in sessions. Many studies revealed that providers expressed satisfaction with telegenetics modalities (Bergstorm et al., 2020; Shannon et al., 2020; Pagliazzi et al., 2020; Pereira et al., 2020) as well as an interest in continuing the practice beyond the pandemic (Bergstorm et al., 2020). In addition to satisfaction, studies found advantages to telegenetic counseling included increased family participation in sessions, geographic barriers broken, and evaluation in home settings to decrease time pressure and increase patient comfort during examinations (Pereira et al., 2020).…”

“…However, the abrupt transition to telegenetics was not without limitations. Bergstorm et al. (2020) found that the most commonly reported challenges of telegenetics were related to paperwork tasks (57.6%) and sample collection (50.2%). In addition, Bergstrom and colleagues reported on the impact of remote work and the sense of isolation that participants have shared highlighting the importance of professional interactions.…”

Genetic counselor experiences with telehealth before and after COVID‐19

“…Genetic counselors’ time spent in direct patient‐facing interactions remained stable, but an increase in time spent utilizing a telehealth model was noted in our participant population. This finding is similar to that observed by Bergstrom et al., ( 2020 ) which noted that in New York state, in‐person consultation was the most common consultation type prior to COVID‐19, and telephone and video were most common after. Bergstrom et al., ( 2020 ) also noted a decrease in consultations following the onset of COVID‐19.…”

“…In one report from Tuscany (Italy), 75% of patients with appointments that had to be re‐scheduled due to the pandemic indicated that they would have canceled their genetics appointment had it been in‐person due to fears of contracting COVID‐19 (Pagliazzi et al., 2020 ). Bergstrom et al., ( 2020 ) and Madden et al., ( 2020 ) reported a significant shift in service modalities in response to COVID‐19 and the ‘NYS on PAUSE’ executive order in New York State; genetic counselors previously providing a primarily face‐to‐face delivery model began providing telephone or video consults at much higher rates. Other centers in New York noted positive patient experiences with the shift to telehealth, with almost 90% of patients satisfied with the care they received (Jeganathan et al., 2020 ).…”