Objective: To demonstrate the feasibility of conducting telemedicine visits, establish the validity and reliability of tele-administered motor/non-motor assessments, and determine the satisfaction of virtual visits to individuals with Huntington disease (HD).

Background: Telemedicine has become a prevalent method for patients to interact with their healthcare providers. Patients with HD often cite time and travel burden as significant barriers to receive care in HDSA centers of excellence. Given these facts, we aim to study the applicability of telemedicine into a specialized HD clinic in a large urban center.

Method: Individuals aged 32-56 with genetically confirmed HD, MoCA score >26, and a smartphone or computer were enrolled. Participants completed 2 pairs of in-person clinics and televisits 1 month apart, and completed all 4 visits within a 9 month time frame. Validity of tele-administered mUHDRS (omitting rigidity and pull testing), TFC, SCWT, and SDMT was assessed by correlating with clinic-administered scales using Pearson correlation coefficients. Intraclass correlation coefficients (ICC) were calculated to assess cross-sectional reliability and agreement between in-person and tele-administered scales. Value of televisits was assessed with a Satisfaction Survey and Resource Utilization Survey.

Results: Thirty-one participants were enrolled. 48.4% completed all study visits. The cross-sectional correlations for UHDRS and mUHDRS at visits 1 and 2 were very high (r=0.95 and r= 0.98), respectively with p<0.01. Similar high correlations were observed for cognitive tests including TFC, SWRT Word and Color and SDMT (r >0.8, p<0.01), but was lower for Color-Word and interference. ICCs showed excellent agreement for UHDRS, TFC, SCWT-Color, SCWT-Word, and SDMT. Ten participants completed the satisfaction and utilization surveys.

Conclusion: The results failed to meet the pre-defined measure of feasibility (80% completion rate). Nonetheless, there was evidence of strong validity and reliability of tele-administration of multiple assessment scales, including administered modified UHDRS, TFC scale, and cognitive assessments SWCT and SDMT. Respondents to the satisfaction and utilization surveys (N=10) were either satisfied or very satisfied with televisit convenience, comfort, and care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/telehd-feasibility-validity-and-value-of-telemedicine-in-huntington-disease/