Patient-reported outcomes for remote and in-person visits for genetic counseling in adult neurology

At our center, we offer clinical genetic counseling (GC) visits for adults with a personal and/or family history of neurologic disease. Here, we report patient experience and outcomes from different visit modalities (e.g., in person, videoconferencing, and telephone) in clinical neurogenetics. Individuals who completed a GC visit in the Neurology Department at the University of Pennsylvania between January 2021 and January 2023 were surveyed after an initial evaluation and/or a disclosure visit. Questionnaires included items validated to measure satisfaction with GC, satisfaction with telehealth, and patient empowerment. Two hundred and ninety-nine individuals submitted 347 survey responses, representing a response rate of 42% (initial) and 31% (disclosure) for each of the surveys. Most responders completed their initial visit in person, while most completed their disclosure visit remotely via videoconferencing or telephone. Patient satisfaction with GC did not differ between visit modalities. For initial visits, telehealth satisfaction was higher for visits regarding the consideration of predictive testing compared to diagnostic testing. For follow-up visits, telehealth satisfaction was higher for videoconferencing compared to telephone disclosure. A majority of responders (69%–78%) reported interest in utilizing telehealth in the future if their genetic counselor thought it was appropriate and a majority of responders (65%–79%) indicated a preference for a combination of in-person and telehealth visits. Individuals who completed an initial visit in person were more likely to decline interest in future telehealth use. This study allowed for some comparison between visit modalities, but more research is needed to understand individuals' preferences and guide recommendations for GC service delivery.