Transitioning to telegenetics in the COVID-19 era: Patient satisfaction with remote genetic counseling in adult neurology

Abstract

The COVID-19 pandemic rapidly changed genetic counseling services across the United States. At the University of Pennsylvania (UPenn), a large academic hospital in an urban setting, nearly all genetic counseling (GC) visits for adult-onset disorders within the Department of Neurology were conducted via secure videoconferencing (telegenetics) or telephone between March and December 2020. Although telemedicine services have been steadily emerging, many clinical programs, including the neurogenetics program at UPenn, had not built infrastructure or widely utilized these services prior to the pandemic. Thus, little is known about patient attitudes toward receiving clinical GC services remotely. From May 18 to October 18, 2020, all individuals seen remotely for GC in adult neurology via telephone or telegenetics were surveyed about their satisfaction with telehealth GC (N = 142), with a response rate of 42% (N = 60/142). Telephone and telegenetics services were referred to as 'telehealth' in the surveys to capture patient perspectives on all remote GC services, though the majority (N = 49/60) of these visits were completed via telegenetics. Surveys included the modified telehealth usability questionnaire (MTUQ), genetic counseling satisfaction scale (GCSS), and novel questions about future telehealth use. Preliminary results suggest that patients were satisfied with receiving remote GC services in adult neurology, with most participants strongly agreeing to all items about satisfaction with telehealth. Just 2% of participants preferred only in-person visits in the future, but every participant was willing to consider using telehealth for future visits if their genetic counselor felt it was appropriate. Most participants preferred a hybrid model (73%), and some (25%) preferred only telehealth for future visits. Additionally, we found no differences in satisfaction with remote services based on visit type (initial vs. results disclosure) nor age. We conclude that remote GC is an acceptable method for the provision of services in adult neurology that is well-received by patients.

Keywords: COVID-19; genetic counseling; neurogenetics; telegenetics; telehealth; telemedicine.

FIGURE 1

Referral Indications. A visual overview of participant diagnoses/referral indications. Those in the predictive category were referred for family history of various neurologic disorders such as those presented on this chart. Numbers represent N (% of cohort)

FIGURE 2

Overall satisfaction with telehealth. Responses to MTUQ questions 1–6 are presented for the N = 52 participants who responded to the MTUQ. Numbers displayed represent the number of responders

FIGURE 3

Overall satisfaction with genetic counseling. Responses to GCSS items 1–6 are presented for the N = 60 participants who responded. Numbers displayed represent the number of responders

FIGURE 4

Willingness to use telehealth and preference for future visit types. N = 52 participants responded to MTUQ question 7 shown in panel a and question 8 shown in panel b. Numbers represent N (% of cohort)