Patient and Caregiver Perspectives on Telehealth Use in a Multidisciplinary Huntington’s Disease Clinic: A Single-Institution Experience

Abstract

Background: The coronavirus pandemic saw technology evolve as outpatient clinics faced restriction of in-person visits. Reliance on telemedicine using two-way audio-video communication significantly increased. Telemedicine was observed to be convenient, cost-effective, reduced no-show rates, and fostered sustained engagement. Enhanced flexibility from short notice scheduling benefitted patients and their caregivers. Greater time value was perceived by patients, and reduced reliance on caregivers. Disadvantages included barriers of access to internet connectivity or equipment. Objective: We aimed to retrospectively survey patients with Huntington’s disease (HD) seen via telehealth in our HDSA Center for Excellence Multidisciplinary clinic. We evaluated usability, learnability, interface quality, reliability, and future use. Methods: This qualitative survey used the 21-item Telehealth Usability Questionnaire. Close-ended responses ranged from strongly disagree to strongly agree scored on Likert scale (1 through 7). Averages were calculated to examine attitudes towards telemedicine. Spearman correlation test was performed to detect attitude biases between patients and caregivers. Results: Respondents were more likely than not to strongly agree with survey statements. Average attitude score of 5.92 (range 2.95-7.00) suggested favorability and improved convenience when telehealth was used in complement to in-person visits, without detriment to patient-provider communication. Spearman correlation coefficient between patient and family/caregiver groups was 0.023, which is below the cutoff of 0.344 for a = 0.05 at N = 24. This suggests there was no bias between patient and caregiver attitudes. Conclusion: This study demonstrated telehealth is favored by caregivers and patients with HD. This population with specific physical, cognitive and psychiatric needs can benefit from adaptive systems that enhance compliance.

Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach

“…This could in turn support early guidance and counseling in coping with HD. As suggested in a recent study on telehealth use in HD ( 24 ), we tailored the user interface to future HD-associated challenges. For example, with the future progression of the disease in mind, we specifically decided on a web-app format that is openly accessible to both HDGECs and partners as well as the larger HD community to facilitate accessibility of the app.…”

Patient experiences receiving rehabilitation care via telehealth: Identifying opportunities for remote care

“…The majority of the respondents (54%) had neurological conditions, including Parkinson's disease, Lewy body dementia, Huntington's disease, and other neurological disorders. Although not specifically delivered in rehabilitation or in multidisciplinary settings, there has been growing evidence for the use of telemedicine for Parkinson's disease in clinical neurological care and research including its use preceding the pandemic though with heightened response to COVID-19 ( 1 , 4 , 32 – 35 ), as well as study of its use for Huntington's disease pre-pandemic ( 36 ), in relation to COVID-19 ( 37 , 38 ), and in two settings of multidisciplinary care ( 39 , 40 ). Those with chronic pain disorders who often require a multi-disciplinary approach may be well-served with virtual telehealth team care models.…”