Telemedicine for Genetic Counseling in Huntington's Disease during the COVID-19 Pandemic

ABSTRACT

Objective: To evaluate the feasibility of using telemedicine for predictive genetic testing in Huntington's disease (HD). Background: While a specific protocol for genetic testing in HD exists, evidence regarding its applicability via telemedicine is lacking. The implementation of social distancing guidelines during the COVID-19 pandemic led us to utilize telehealth visits in our clinic for predictive testing. Methods: From May 2020 to Sep 2021, eligible patients seen at the UTHealth Houston, HDSA Center of Excellence multidisciplinary clinic were offered predictive genetic testing via telemedicine. The 2016 HDSA recommendations for predictive testing were adapted and implemented via telemedicine. Visits were conducted by a team consisting of a movement disorder specialist, genetic counselor, psychiatrist, neuropsychologist, and social worker utilizing institute-approved telemedicine platforms. Patient satisfaction and telehealth quality were assessed with Telehealth Usability Questionnaire (TUQ), which included the components of usefulness, ease of use, interface quality, interaction quality, reliability, and satisfaction [1]. Results: 50 individuals expressed interest in predictive testing via telemedicine. Of these, 11 did not continue after initial inquiry and three had already prior testing [Fig. 1]. Of the remaining 36 individuals (mean age 37.17 ± 13.23 years), 21 completed the consent and sample collection with an in-person visit. For 15 elected to use telemedicine consent was obtained via telemedicine, and sample collection was coordinated remotely. 21 individuals had results disclosure via telemedicine, 13 of whom used telemedicine for both visits. Seven out of 21 completed the TUQ and rated the visit usability as 92.5% usefulness, 75.5% ease of use, 78.6% interface quality, 86.7% interaction quality, 64.1% reliability, and 89.3% satisfaction and future use. Conclusion: Delivering the predictive testing protocol via telemedicine depends on various patient and clinician-related factors including ease of use, comfort with the type of visit and technology used. In our experience, a majority of patients who underwent telemedicine for genetic counseling and result disclosure were satisfied and would use this service in the future. Despite the convenience and patient satisfaction, it is imperative that caution is applied prior to determining patient readiness and result disclosure given the sensitive nature of HD gene testing.