Telehealth genetic services during the COVID‐19 Pandemic: Implementation and patient experiences across multiple specialties in Nebraska

Abstract

The COVID-19 pandemic has altered the delivery of genetics services. In response to the pandemic, our genetics department offered telehealth visits to all outpatients, regardless of their physical proximity to Omaha, Nebraska. Traditionally, our department did not offer telehealth visits to patient's homes or to patients who lived in close proximity to a genetics clinic. Therefore, we designed a survey to gain insight into the patient experience with remote genetic counseling appointments during the pandemic. Any patient referred to see a genetics provider in pediatrics, prenatal, adult, or cancer between March 16, 2020 and October 28, 2020 was eligible for the study. The survey included both quantitative and qualitative measures to assess patient demographics, patient experience, stressors during the COVID-19 pandemic, and anxiety and depression. We hypothesized that patients would report they received quality care by telehealth despite the presence of COVID-19-related stressors or anxiety/depression. From the 143 survey participants, 80% had their first telehealth appointment during the pandemic. The vast majority (96%) reported that they felt like they received quality care by telehealth. Additionally, more than 93% of participants strongly or somewhat agreed that their genetic providers were attentive to their emotional needs, medical needs, and privacy. Since March 2020, participants reported experiencing several COVID-19-related stressors including fear of illness (86%), feelings of isolation (45%), and safety concerns (33%). Relatively low levels of depressive and anxiety symptoms were recorded using the HADS questionnaire.Despite the prevalence of COVID-19 stressors, depression, and/or anxiety, our participants felt they received quality care via telehealth. In fact, 51% agree that they prefer to receive future genetics services virtually. These results suggest the value of telehealth as an alternative service delivery model, even for local patients, and should be offered for future appointments, beyond the COVID-19 pandemic.

Comparison of willingness and preference for genetic counseling via telemedicine: before vs. during the COVID-19 pandemic

“…High willingness to use telemedicine was observed in both groups in our study, consistent with reports from clinics across other genetic counseling specialties (Dratch et al 2021 ; Sim et al 2021 ). Similar to our findings regarding preference, other studies have noted that about half of respondents preferred telemedicine over in-person care across genetic counseling specialties, with this preference being even higher in some specialty areas (Dratch et al 2021 ; Jeganathan et al 2020 ; Rezich et al 2021 ). Studies across other medical specialties surveying adults in the general population, those affected by chronic diseases, and those seeking psychiatric services have also shown that about half, if not more, of respondents prefer some proportion of telemedicine-based visits in future care (Oikonomidi et al 2021 ; Predmore et al 2021 ; Yue et al 2022 ).…”

“…Those who prioritized the convenience of the location of the visit tended to be more willing to use telemedicine and had a stronger preference for telemedicine, while those who prioritized the ability to interact with the genetic counselor were less willing to use telemedicine and tended to prefer in-person visits. There was no association between concern for COVID-19 and willingness or preference to use telemedicine, despite this being observed in a previous study (Rezich et al 2021 ). This could suggest that concern related to the COVID-19 pandemic, such as risk of exposure, was not a major determinant of individuals’ high willingness to use telemedicine and their preference for it in our study.…”

“…Studies have shown that a crucial aspect of genetic counseling is exploring, and providing support through, genetic diagnoses, their psychological implications, and adaptation to them, which these respondents may have found challenging in a fully telemedicine-based model (Gorrie et al 2021 ). Furthermore, a frequently reported concern among patients is the ability to adequately connect emotionally with their provider during telemedicine visits (Rezich et al 2021 ; Sim et al 2021 ).…”

“…Studies investigating telemedicine use during the pandemic have demonstrated high satisfaction and adherence to care and decreased rates of missed appointments (Aziz et al 2020 ; Dratch et al 2021 ; Jeganathan et al 2020 ; Mann et al 2020 ; Pagliazzi et al 2020 ; Ramaswamy et al 2020 ; Rezich et al 2021 ; Shannon et al 2021 ). Others have shown that genetic counseling patients are comfortable with and willing to use telemedicine (Dratch et al 2021 ; Rezich et al 2021 ; Sim et al 2021 ). Patients’ preferences for telemedicine-based vs. in-person healthcare visits have varied between studies.…”

“…Patients’ preferences for telemedicine-based vs. in-person healthcare visits have varied between studies. While the majority of patients preferred a combination of in-person and telemedicine visits in the future in some studies, others have demonstrated a preference for all telemedicine-based or all in-person care (Dratch et al 2021 ; Jeganathan et al 2020 ; Rezich et al 2021 ; Sim et al 2021 ).…”