Margaret Ivancic, Jessica Shurer, Hailey Daly, Nina Browner, Miriam Sklerov
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引用次数: 0
Abstract
Background & objectives: Atypical parkinsonism syndromes (multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal syndrome (CBS)) are life-limiting neurodegenerative disorders with complex motor and nonmotor symptoms. A person-centered, coordinated, multidisciplinary approach may provide optimal care. Interdisciplinary care models in complex neurologic diseases are shown to improve disease outcomes. It is unknown whether specialized interdisciplinary care benefits people with atypical parkinsonism. Our study sought to determine patient satisfaction with a specialized atypical parkinsonism interdisciplinary clinic.
Methods: A retrospective, cross-sectional analysis was conducted of anonymous satisfaction surveys from patients who attended the UNC atypical parkinsonism interdisciplinary clinic from 10/2017-3/2024. The survey was divided into four subcategories - Services, Results, Clinicians, and Overall Experience. Responses were converted to numerical values for statistical analysis. Linear regression was used to determine predictors of overall experience scores. Qualitative data was analyzed and categorized into themes.
Results: 51.4% of all clinic attendees were diagnosed with PSP, 36.5% with MSA, and 9.5% with CBS. 39 of 74 (52.7%) satisfaction surveys were completed. Survey responses indicated high levels of satisfaction across all categories. Responses in the services category were the strongest predictor of variability in overall experience scores. Common themes from qualitative data were expressions of gratitude and constructive feedback.
Discussion: We report high patient satisfaction ratings in this first investigation of patient-centered outcomes in specialized interdisciplinary clinics for atypical parkinsonism. Future investigations focused on quality of life and care partner burden will provide additional insights for best care practices for people living with atypical parkinsonisms.
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