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. 2021 Jul 19;8(3):232-238.
doi: 10.17294/2330-0698.1836. eCollection 2021 Summer.

The Experience of OFF Periods in Parkinson's Disease: Descriptions, Triggers, and Alleviating Factors

Sneha Mantri  1 , Madeline Lepore  2 , Briana Edison  2 , Margaret Daeschler  3 , Catherine M Kopil  3 , Connie Marras  4 , Lana M Chahine  2
Affiliations

The Experience of OFF Periods in Parkinson's Disease: Descriptions, Triggers, and Alleviating Factors

Sneha Mantri et al. J Patient Cent Res Rev. .

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.

Keywords: Parkinson’s disease; communication barriers; coping strategies; triggers; wearing off.

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Conflict of interest statement

Conflict of interest Sneha Mantri receives research support from The Michael J. Fox Foundation (MJFF), the Parkinson Foundation, and Cerevel Therapeutics, was a paid consultant to MJFF, is a study site investigator for a study sponsored by Neuraly Rho, is a study site subinvestigator for a study sponsored by Biogen, and is contracted with Deep Brain Innovations, LLC, and Grey Matter Technologies, Inc. Margaret Daeschler was an employee of the sponsor, MJFF, at the time this work was done. Catherine Kopil is an employee of MJFF. Connie Marras was a paid consultant for Acorda Therapeutics, is on the advisory board of Denali Therapeutics, received honoraria for teaching from EMD Serono, and is a steering committee member for MJFF Grants Canadian Institutes of Health Research, the Parkinson’s Foundation, the National Institutes of Health, and the International Parkinson and Movement Disorders Society, and is contracted with Grey Matter Technologies. Lana Chahine receives research support from MJFF, has received travel payment from MJFF to MJFF conferences, is a paid consultant to MJFF, receives research support from the University of Pittsburgh Medical Center Competitive Medical Research Fund, is study site investigator for a study sponsored by Biogen, is a site subinvestigator for a study sponsored by Voyager, received payment from Elsevier (for book authorship), and receives royalties from Wolters Kluwer (for book authorship).

References

    1. Ahlskog JE, Muenter MD. Frequency of levodopa-related dyskinesias and motor fluctuations as estimated from the cumulative literature. Mov Disord. 2001;16:448–58. doi: 10.1002/mds.1090. - DOI - PubMed
    1. Chou KL, Stacy M, Simuni T, et al. The spectrum of “off” in Parkinson’s disease: What have we learned over 40 years? Parkinsonism Relat Disord. 2018;51:9–16. doi: 10.1016/j.parkreldis.2018.02.001. - DOI - PubMed
    1. Kerr C, Lloyd EJ, Kosmas CE, et al. Health-related quality of life in Parkinson’s: impact of ‘off’ time and stated treatment preferences. Qual Life Res. 2016;25:1505–15. doi: 10.1007/s11136-015-1187-0. - DOI - PubMed
    1. Rastgardani T, Armstrong MJ, Gagliardi AR, Grabovsky A, Marras C. Experience and impact of OFF periods in Parkinson’s disease: a survey of physicians, patients, and carepartners. J Parkinsons Dis. 2020;10:315–24. doi: 10.3233/JPD-191785. - DOI - PubMed
    1. Aradi SD, Hauser RA. Medical management and prevention of motor complications in Parkinson’s disease. Neurotherapeutics. 2020;17:1339–65. doi: 10.1007/s13311-020-00889-4. - DOI - PMC - PubMed

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