Interdisciplinary Telemedicine Services for Huntington's Disease: A 20-Year Experience

Huntington's disease (HD) is a complex neurodegenerative disorder that causes impairment in cognitive, motor, and psychological function and requires subspecialty neurological and interdisciplinary care. Access to subspecialty care for HD is restricted by disability from the disease, lack of trained providers, and barriers to care for disadvantaged and rural populations. Since 1999, the University of Virginia HD clinic has used telemedicine to provide clinical services, consultation, and staff training. Initially, encounters were scheduled with the neurologist on a case-by-case basis at outlying rural clinics and community hospitals. Since 2015, telemedicine visits have been conducted by the entire interdisciplinary HD team and access has been extended to homes and long-term care facilities. This infrastructure was used to conduct a virtual clinic 2 days after initiation of coronavirus disease (COVID) mitigation. The clinic has continued to provide subspecialty and interdisciplinary care through telemedicine while clinic access has been restricted. A total of 69 individuals have been seen in 127 telemedicine visits, 56 of which were conducted by the interdisciplinary team. Telemedicine can provide high-quality subspecialty neurological and interdisciplinary care for HD that offers continuity across a wide range of care settings, and can overcome both anticipated and unanticipated barriers to access.