Melissa J Armstrong1, Tara Rastgardani1, Anna R Gagliardi1, Connie Marras1. 1. Department of Neurology (MJA), University of Florida College of Medicine, Gainesville; Morton and Gloria Shulman Movement Disorders Centre and the Edmond J Safra Program in Parkinson's Research (TR, CM), Toronto Western Hospital; and Toronto General Hospital Research Institute (ARG), University Health Network, Ontario, Canada.
Abstract
BACKGROUND: The definition of off periods proposed in 2018 emphasizes functional disability as part of the off period experience, but limited research to date investigates the functional impact of off periods on persons with Parkinson disease and care partners. This study aimed to investigate the impact of off periods on both persons with Parkinson disease and care partners through interviews of dyads living with motor and/or nonmotor fluctuations. METHODS: Investigators performed interviews separately with persons with Parkinson disease and care partners using a semistructured questionnaire. Investigators used a qualitative descriptive approach to identify themes in interview transcripts relating to the impact of off periods on daily life. Identified themes were subsequently organized using World Health Organization quality of life domains. RESULTS: Twenty persons with Parkinson disease and their care partners (total n = 40) participated in interviews. Persons with Parkinson disease described impairments in level of independence (e.g., relating to employment, mobility, activities of daily living, and medication timing), socialization, leisure activities, driving, physical function, and psychological experiences relating to off periods. Care partners reported off period impacts on their own independence, socialization, leisure, and psychological experiences. CONCLUSIONS: Clinicians should query the daily impact of off periods on both persons with Parkinson disease and care partners at clinical visits to inform treatment decisions and counseling. Measures of off period impact should be incorporated into clinical trials targeting fluctuations to fully understand the effects of interventions for fluctuations.
BACKGROUND: The definition of off periods proposed in 2018 emphasizes functional disability as part of the off period experience, but limited research to date investigates the functional impact of off periods on persons with Parkinson disease and care partners. This study aimed to investigate the impact of off periods on both persons with Parkinson disease and care partners through interviews of dyads living with motor and/or nonmotor fluctuations. METHODS: Investigators performed interviews separately with persons with Parkinson disease and care partners using a semistructured questionnaire. Investigators used a qualitative descriptive approach to identify themes in interview transcripts relating to the impact of off periods on daily life. Identified themes were subsequently organized using World Health Organization quality of life domains. RESULTS: Twenty persons with Parkinson disease and their care partners (total n = 40) participated in interviews. Persons with Parkinson disease described impairments in level of independence (e.g., relating to employment, mobility, activities of daily living, and medication timing), socialization, leisure activities, driving, physical function, and psychological experiences relating to off periods. Care partners reported off period impacts on their own independence, socialization, leisure, and psychological experiences. CONCLUSIONS: Clinicians should query the daily impact of off periods on both persons with Parkinson disease and care partners at clinical visits to inform treatment decisions and counseling. Measures of off period impact should be incorporated into clinical trials targeting fluctuations to fully understand the effects of interventions for fluctuations.