Affiliations: Department of Neurology, University of Rochester, Rochester, NY, USA | Johns Hopkins University School of Medicine, University of Rochester, Rochester, NY, USA | Duke University School of Medicine University of Rochester, Rochester, NY, USA | Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA
Note: [] Correspondence to: Kevin M. Biglan, M.D., M.P.H., University of Rochester, Rochester, NY 14620, USA. Tel.: +1 585 275 2427; Fax: +1 585 276 1870; E-mail: Kevin_Biglan@urmc.rochester.edu
Abstract: 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.
