Sneha Mantri1, Madeline Lepore2, Briana Edison2, Margaret Daeschler3, Catherine M Kopil3, Connie Marras4, Lana M Chahine2. 1. Department of Neurology, Duke University, Durham, NC. 2. Department of Neurology, University of Pittsburgh, Pittsburgh, PA. 3. The Michael J. Fox Foundation for Parkinson's Research, New York, NY. 4. Edmond J. Safra Program in Parkinson's Disease, Toronto Western Hospital, University of Toronto, Toronto, Canada.
Abstract
PURPOSE: Wearing off of Parkinson's disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood. We aimed to assess the lived experience of OFF periods for people with Parkinson's disease. METHODS: Participants in the longitudinal Fox Insight study who endorsed OFF periods were invited to complete a survey consisting of both multiple-choice and free-text responses. Descriptive statistics were used to summarize multiple-choice responses, and free-text responses were classified into themes through iterative discussion by 3 movement disorders specialists. RESULTS: A total of 2110 participants (52.4% male) completed the survey. Tremor was the most common description of OFF periods (n=1038, 49.2%), followed by gait changes (n=535, 25.4%) and rigidity (n=430, 20.4%). Of 1498 specific triggers for OFF symptoms, the most common was stress (n=920, 61.4%), followed by anxiety/depression (n=476, 31.8%) and tiredness/fatigue (n=351, 23.4%). Common coping strategies (n=1416 responses) included exercise (n=678, 47.9%), taking a break (n=504, 35.6%), and meditation (n=276, 19.5%). CONCLUSIONS: Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinson's disease.
PURPOSE: Wearing off of Parkinson's disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood. We aimed to assess the lived experience of OFF periods for people with Parkinson's disease. METHODS: Participants in the longitudinal Fox Insight study who endorsed OFF periods were invited to complete a survey consisting of both multiple-choice and free-text responses. Descriptive statistics were used to summarize multiple-choice responses, and free-text responses were classified into themes through iterative discussion by 3 movement disorders specialists. RESULTS: A total of 2110 participants (52.4% male) completed the survey. Tremor was the most common description of OFF periods (n=1038, 49.2%), followed by gait changes (n=535, 25.4%) and rigidity (n=430, 20.4%). Of 1498 specific triggers for OFF symptoms, the most common was stress (n=920, 61.4%), followed by anxiety/depression (n=476, 31.8%) and tiredness/fatigue (n=351, 23.4%). Common coping strategies (n=1416 responses) included exercise (n=678, 47.9%), taking a break (n=504, 35.6%), and meditation (n=276, 19.5%). CONCLUSIONS: Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinson's disease.
Authors: Terry Ellis; Jennifer K Boudreau; Tamara R DeAngelis; Lisa E Brown; James T Cavanaugh; Gammon M Earhart; Matthew P Ford; K Bo Foreman; Leland E Dibble Journal: Phys Ther Date: 2013-01-03
Authors: Sabine Schootemeijer; Nicolien M van der Kolk; Terry Ellis; Anat Mirelman; Alice Nieuwboer; Freek Nieuwhof; Michael A Schwarzschild; Nienke M de Vries; Bastiaan R Bloem Journal: J Parkinsons Dis Date: 2020 Impact factor: 5.568