Telemedicine-based approach to caring for patients with inherited retinal diseases: patient satisfaction and diagnostic testing completion rates

Background During the COVID-19 pandemic, the Emory Ophthalmic Genetics Service (EOGS) adopted a hybrid telehealth-based care model, with patients undergoing a tailored panel of ancillary tests in addition to a video telehealth encounter with the EOGS physician. This study evaluates patient satisfaction with this model and effectiveness of these encounters in producing a clinical and genetic diagnosis. Materials and Methods A trained interviewer administered a 14-question validated patient satisfaction survey to eligible subjects between October 2020 and April 2021. A mean "favorability index" for patient satisfaction was calculated (maximum score = 5). Rates of ancillary testing, completion of genetic testing, and diagnostic accuracy were also assessed, and compared to results from a control group of EOGS patients that underwent in-person visits. Results Twenty-one of 33 eligible patients completed the survey. Nine (42.9%) were female, with mean (+/- SD) age 51.3 +/- 13.6 years. The control group was comprised of 49 subjects, predominantly female (71.4%), with mean age 51.5 +/- 15.2 years. The mean (range) favorability index was 4.3 (3.1-5.0). Rates of ancillary testing were lower for the telemedicine group vs. the control group: 38.1% vs. 85.7% (p < .001) for electrophysiology; 42.9% vs. 71.4% (p = .03) for perimetry; and 81.0% vs. 95.9% (p = .04) for fundus imaging. Two (11.1%) and 1 (2.8%) (p = .21) subjects in the telehealth and control groups, respectively, did not complete recommended genetic testing. The clinical diagnosis was compatible with the genetic diagnosis in all subjects. Conclusions Our results suggest high patient satisfaction and diagnostic accuracy with a hybrid telemedicine-based approach for IRD care, despite lower rates of ancillary testing and no in-person examination.