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P.020 Advanced care team for Parkinson’s: a novel approach for patients and carepartners in advanced parkinsonism
Published online by Cambridge University Press: 05 June 2023
Abstract
Background: People with parkinsonian syndromes (PPS) in advanced stages deal with a wide range of highly impactful motor and non-motor problems, including dementia, hallucinations, falls, and dysautonomia. Care planning becomes difficult and unpredictable. In addition, while healthcare providers focus on reducing symptom burden, PPS and carepartners deal with difficult emotions such as demoralization and grief. At those stages, multidisciplinary care becomes imperative. In October 2022 we launched Advanced Care Team for Parkinson’s (ACT-PD), a clinical research program whose goals include advanced care planning, symptoms management and emotional support. Methods: Our primary outcomes are changes in quality of life (QoL-AD), carepartner burden (ZBI-12) and patient satisfaction. The team involves neurology, palliative nursing, social-work, psychology, and spiritual care. Every three months, participants meet the team in person or virtually. In two hours, they address tailored concerns, complemented with phone calls as required. Accordingly, participants complete assessments. Results: In its first 4 months, ACT-PD included 40 PPS and 40 carepartners. Preliminary results show that the first visit with ACT-PD resulted in a 30% reduction in carepartner burden and 28% of improvement in patients’ QoL. Conclusions: Even in early phases, this novel patient and carepartner-centered approach improves QoL and reduces carepartner burden in PPS in advanced disease stages.
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- © The Author(s), 2023. Published by Cambridge University Press on behalf of Canadian Neurological Sciences Federation