A Pilot Study of Virtual Visits in Huntington Disease

• Published in: Journal of Huntington's disease Vol. 3; no. 2; pp. 189 - 195
• Main Authors: Bull, Michael T., Darwin, Kristin, Venkataraman, Vinayak, Wagner, Joseph, Beck, Christopher A., Dorsey, E. Ray, Biglan, Kevin M.
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 2014
• Subjects: Adult; Aged; Feasibility Studies; Female; Humans; Huntington Disease - physiopathology; Huntington Disease - therapy; Male; Middle Aged; Motor Activity - physiology; Pilot Projects; Reproducibility of Results; Telemedicine - methods; Telemedicine - standards; United States; Videoconferencing; United States; feasibility; remote assessment; Telehealth; Huntington disease; reliability
• ISSN: 1879-6397; 1879-6397
• DOI: 10.3233/JHD-140102

Background: Virtual visits through web-based video conferencing can increase access to specialty care for individuals with Huntington disease (HD) and facilitate research participation. Objective: To determine the feasibility of conducting virtual visits directly into the homes of individuals with HD, to assess the reliability of conducting remote versus in-person motor assessments, and to determine the test-retest reliability of conducting motor assessments remotely. Methods: Individuals with mild to moderate HD underwent baseline in-person clinic assessments and completed a HD care survey. Participants were randomized to receive three virtual visits from one of two physicians over four months that included a modified Unified Huntington's Disease Rating Scale motor examination (excluding rigidity and balance assessments) via web-based video conferencing. Intraclass coefficients (ICC) were calculated to determine the level of agreement between remote and in-person assessments. Participants also completed a survey on their interest in telemedicine. Results: Thirteen individuals underwent baseline assessments, eleven (85%) participants completed at least one virtual visit, and 27 (82%) of 33 total virtual visits were completed. Remote motor scores demonstrated good reliability (ICC = 0.78; n = 11) compared to in-person motor scores. Test-retest reliability of motor scores conducted remotely was excellent (ICC = 0.90; n = 11). Participants expressed moderate future interest in using virtual visits to participate in research and to receive care. Conclusion: In this pilot study, virtual visits into the home were feasible and reliable for conducting motor assessments in HD. Larger scale studies need to confirm and generalize these findings to a broader population of participants.