Objective: To determine the feasibility and preliminary efficacy of implementing multidisciplinary “palliative virtual home” (PVH) visits for caregivers (CGs) & patients with Atypical Parkinsonian Disorders (APDs) to improve quality of life (QOL) and reduce psychosocial burden.

Background: Individuals with APDs (i.e. MSA, DLB, CBS and PSP) face physical, neuropsychiatric, psychosocial, and spiritual stressors. Multidisciplinary care integrating palliative care principles has the potential to improve QOL by prioritizing the relief of suffering. However, the physical burdens of disease confer a major barrier to routine and otherwise time-consuming, multidisciplinary care. Rapidly evolving telemedicine technology may provide a readily accessible solution to enable more specialized care for this unique patient population.

Methods: This observational MDS-funded pilot study is recruiting patients with APDs & their CGs from two University-based Movement Disorders centers to participate in 2 telemedicine home visits over 6 months. Visits deliver multidisciplinary consultation with a Movement Disorders Neurologist, Palliative Medicine Specialist, Nurse, Social Worker, & Spiritual Counselor. Visits prioritize symptomatic treatment, barriers to improving QOL, clarification of goals of care, & assessment of needs and resources. Feasibility is calculated as the proportion of predicted virtual visits actually completed. QOL and psychosocial outcome measures include interim changes on the Palliative Performance Scale v2 (PPS), Quality-of-Life-AD (QOL-AD), Geriatric Depression Scale-15 (GDS-15), & Zarit Caregiver Burden Interview (Z-CBI) scale. Visit satisfaction was surveyed qualitatively after each visit amongst providers & participants.

Results: Currently, 100% of 10 patients with APDs have enrolled in the study & successfully completed their first virtual home visit. Patients’ PPS functional levels range from 20-80%, showing a wide range of disability. A variety of problems have been addressed including: management of orthostasis and dystonia, locating nearby rehabilitative services, clarifying goals of care, & providing support & self-care strategies to over-burdened CGs. Post-visit surveys thus far show unanimous satisfaction with development of rapport & personalized care despite the “virtual aspect.”

Conclusions: Preliminary evidence from 2 centers suggests that palliative home visits are feasible, & may improve QOL & psychosocial burden for patients with APDs. Telemedicine technology may allow for more widespread delivery of higher-level, patient-centered care for APDs.

« Back to 2018 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/palliative-virtual-home-visits-for-atypical-parkinsonian-disorders-pvh-park-study/