Exploring the experiences, priorities and preferences of people living with Parkinson’s on exercise and physical activity promotion in the UK

Abstract

Background People with Parkinson’s (PwP) want access to timely, relevant, and specific exercise and physical activity (PA) information to enable them to manage their symptoms and maintain wellbeing and quality of life. Research that promotes exercise in this population group is limited. Little is also known about the clinical practice around PA promotion in this population, especially around the time of diagnosis. Objective To explore the experiences, preferences, and priorities of PwP around exercise and PA promotion and assess their knowledge on these topics. Methods A cross-sectional online survey for PwP in the United Kingdom was conducted from July to December 2021. Results 430 participants started the survey and 405 completed it. Participants had a mean age of 65.1 (±9.2) and had been living with Parkinson’s for a varying time (up to 2 years = 38%, up to 6 years = 39% and for 7 or more years = 23%). Most participants reported they had not received an education (68%; n = 276) or exercise intervention (54%; n = 217) as part of their routine management by the National Health Service (NHS) since diagnosis and had sought services privately. Knowledge of the overall benefits of exercise was good, however participants lacked specific knowledge on the impact of Parkinson’s Disease (PD) on posture, falls and muscle strength. 90% of participants reported they would participate in an exercise and PA education interventions. Conclusions PwP want exercise and PA education interventions that provide knowledge, skills and access to opportunities that enable participation. For the majority, these interventions have not been provided as part of their routine care pathway. To align with the priorities and preferences of PwP, interventions should be offered around the time of diagnosis, include content that is relevant and specific to how exercise and PA can mitigate symptoms of PD and should be delivered in person or online in a group setting.