Abstract
Studies of telehealth genetic counseling (THGC) services, including videoconferencing and telephone counseling, have highlighted the need for further research on the patient experience. The COVID-19 pandemic resulted in a rapid shift from in-person genetic counseling to THGC. Most studies to date focused on THGC for cancer genetics, with only a handful of studies investigating patient satisfaction for other subspecialties. This study assessed patients’ perspectives of the advantages and disadvantages of THGC and their satisfaction with this service delivery model for multiple subspecialties. A patient satisfaction survey was designed to assess the experience of study participants at the time of referral, scheduling, during, and after the THGC appointment, as well as participants’ overall satisfaction with the THGC process. Survey invitations were emailed to 485 patients between December 2020 and September 2021 following their last anticipated THGC appointment. Descriptive statistics were used for the analysis. One-way ANOVA was used to measure differences in reported satisfaction across subspecialties. A total of 103 patients responded (21.2%; 103/485). Almost half of participants reported that they were referred for hereditary cancer counseling (48.5%; 49/101) followed by reproductive genetics (13.9%; 14/101), neurogenetics (12.9%; 13/101), cardiogenetics (7.9%; 8/101), clinical genomics/exome sequencing (3%; 3/101), and ophthalmology (2%; 2/101). Most respondents (90.7%; 88/97) elected a telephone appointment versus videoconferencing, with the most common reason being “because it was easier” (70.8%; 63/89). Patient-perceived advantages of a THGC appointment were not needing to travel (94.5%; 86/91) and the ability to get an appointment that worked with their schedule (82.4%; 75/91). Safety concerns related to COVID-19 were cited as a benefit of THGC for 38.5% (35/91). Patient-perceived drawbacks included someone overhearing the conversation who was not invited (14.4%; 14/97) and distraction by other adults or children (7.2%; 7/97). Only 7.9% (7/89) of respondents agreed or strongly agreed with the statement “If I needed genetic counseling again, I would choose an in-person appointment.” Nearly all respondents agreed or strongly agreed with the following statements: “I received the same care by telephone or video as I would expect at an in-person appointment” (95.5%; 85/89), “I would recommend a phone or video appointment for genetic counseling to family and friends” (89.9%; 80/89), and “Overall, I am satisfied with the quality of the appointment” (98.9%; 88/89). There was no statistical difference in reported satisfaction across subspecialties (p = 0.823). Respondents for all subspecialties overwhelmingly reported that they were satisfied with the THGC experience. Some studies have suggested that providers prefer videoconferencing appointments. However, the vast majority of patients who responded to this survey elected telephone appointments, providing insight into patient preferences for THGC services. Although this survey was distributed during the pandemic, the most frequently selected benefits were related to logistical and scheduling issues as opposed to safety concerns related to COVID-19. These data support the use of THGC across multiple specialties as a patient-desired model of care, and helps to fill a gap in the literature by examining the experiences of patients seen for multiple subspecialties, beyond cancer genetics.
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