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

Background: 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. Program Description: 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. Conclusions: 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.

Primary Palliative Care in Huntington's Disease.

Background: Palliative care practices, including communication about patient-centered goals of care and advance care planning (ACP), have the potential to enhance care throughout the course of Huntington's disease (HD) and related disorders. The goal of our project was to develop a pilot program that integrates primary palliative care practices with interdisciplinary care for HD. Objectives: (1) To train HD team members to facilitate goals of care and ACP conversations at all stages of HD; (2) To create materials for care planning in HD focused on patient-centered goals of care and health-related quality of life; and (3) To modify clinic workflow to include goals of care and ACP discussions. Methods: We defined planning domains to expand care planning beyond end-of-life concerns. We created a patient and family guide to advance care planning in HD. We conducted VitalTalk communications training with the HD team. We modified the interdisciplinary clinic workflow to include ACP and developed an EMR template for documentation. Results: After communication training, more team members felt well prepared to discuss serious news (12.5% to 50%) and manage difficult conversations (25% to 62.5%). The proportion of clinic visits including advance care planning discussions increased from 12.5% to 30.6% during the pilot phase. Conclusions: Provision of primary palliative care for HD in an interdisciplinary clinic is feasible. Integration of palliative care practices into HD specialty care requires additional training and modification of clinic operations.

Promoting patient participation in healthcare interactions through communication skills training: A systematic review.

OBJECTIVE: To present literature on training patients in the use of effective communication skills. METHODS: Systematic searches were conducted in six databases. References were screened for inclusion through several phases. Extracted data included intervention study design, sample characteristics, content and structure of training programs, outcomes assessed, and findings reported. RESULTS: A total of 32 unique intervention studies were included. Most targeted primary care or cancer patients and used a randomized controlled study design. Interventions used a variety of training formats and modes of delivering educational material. Reported findings suggest that communication training is an effective approach to increase patients' total level of active participation in healthcare interactions and that some communication behaviors may be more amenable to training (e.g., expressing concerns). Trained patients do not have longer visits and tend to receive more information from their providers. Most studies have found no relationship between communication training and improved health, psychosocial wellbeing, or treatment-related outcomes. CONCLUSIONS: Findings reinforce the importance and potential benefits of patient communication training. PRACTICE IMPLICATIONS: Additional research is warranted to determine the most efficacious training programs with the strongest potential for dissemination.