Abstract
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 for 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. TeleHD studied the applicability of telemedicine in a specialized HD clinic at a large urban center.
Methods: Individuals aged 18 to 70 with genetically confirmed HD, MoCA score >26, and a smartphone or computer were enrolled. Participants completed 2 pairs of in-person clinic and televisits 1 month apart, completing all 4 visits within a 9-month time frame. Validity of tele-administered composited Unified Huntington's Disease Rating Scale (UHDRS) component of Total Motor Score (TMS), Total Functional Capacity (TFC) Score, Symbol Digit Modalities Test (SMT), and Stroop Color and Word Test (SCWT) was assessed by measuring the strength of the association 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. The value of televisits was assessed with a Satisfaction Survey and Resource Utilization Survey.
Results: Thirty-one participants were enrolled. 55% completed all study visits. The cross-sectional correlations for TMS and mTMS at visits 1 and 2 were very high (r=0.95 and r= 0.98), respectively with p<0.01. Similarly high correlations were observed for cognitive tests including TFC, SWRT Word and Color and SDMT (r >0.8, p<0.01), but were lower for Color-Word and Interference. ICCs showed excellent agreement for TMS and mTMS, TFC, SCWT-Color, SCWT-Word, and SDMT. Ten participants completed the satisfaction and utilization surveys.
Conclusions: The results failed to meet the pre-defined measure of feasibility (80% completion of both telehealth visits). Nonetheless, there was evidence of strong validity and reliability of tele-administration of multiple assessment scales, including administered modified TMS, 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.