The Impact of a Community-Based Exercise Program on Individuals with Parkinson's Disease: A Multiple Methods Investigation

Background: Parkinson’s disease (PD) is a complex and progressive neurological condition that poses considerable challenges not only to individuals with PD but also to their families and the healthcare system. Affecting a significant proportion of older adults worldwide, PD is a major contributor to disability in aging populations. The global prevalence of Parkinson’s disease is expected to increase substantially in the coming decades, driven primarily by population aging and demographic shifts. Both motor impairments, such as impaired gait and tremor, and non-motor symptoms, including mood disorders, autonomic dysfunction and cognitive decline, may be present in people living with PD. These profoundly diverse symptoms may impact daily functioning, often leading to diminished physical activity and increased sedentary behavior. Research suggests that individuals with PD frequently struggle to achieve recommended levels of physical activity, exacerbating their health challenges. Additionally, a prolonged sedentary lifestyle, which is more prevalent in this population, may contribute to long-term poor health outcomes. Alongside other therapeutic options, physical activity and exercise have been shown to offer numerous benefits for individuals with PD, including improved motor function and potential neuroprotective effects. However, sustained participation remains a significant hurdle for many individuals with PD, often due to structural, availability, and accessibility barriers, as well as associated health conditions. Community-based exercise programs tailored specifically to individuals with PD have emerged as one promising solution to improve participation. Such exercise programs typically combine PD-specific exercises with opportunities for social interaction, aiming to enhance mobility, strength, and overall well-being, while also fostering motivation and adherence through a supportive environment. Challenges related to long-term participation persist, highlighting the importance of understanding the facilitators and barriers to long-term engagement in these programs. Addressing these factors is essential for optimizing program benefits and improving the lives of those affected by PD. Objectives: This thesis explored the impact of a community-based, PD-specific exercise program on the health and quality of life of individuals with PD. Using a multiple-method approach, comprising a qualitative study and cross-sectional survey, the research aimed to provide an understanding of the benefits and challenges associated with a community-based PD-specific program and what characteristics impacted participants with PD and their care partners. The first objective was to understand the experiences of individuals with PD, their care partners, and program providers in a PD-specific community exercise program, with a focus on identifying personal, social, structural, and program-related barriers and facilitators to participation. The second objective was to examine the symptom burden of those people living with PD who participated in the program. Methods: A staged, multiple-methods study was conducted in a sample of persons with PD, their care partners and program providers at the Parkinson Association of Alberta (PAA). Eligible participants had completed a minimum of 12 weeks in a community-based exercise program offered by the PAA. The exercise program consists of 60 minute-sessions held twice weekly, with no limit on the number of sessions participants may attend. Qualitative study: A phenomenological approach was used to explore the experiences of individuals with PD, their care partners, and program providers. Participants included individuals with PD at Hoehn & Yahr (H&Y) stages I-III, on a stable medication regimen, and had engaged in a PD-specific exercise program at least twice weekly for a minimum of 12 weeks. A total of 17 individuals with PD, 7 care partners, and 3 program providers were recruited from the PAA. Semi-structured interviews were conducted between January and May 2024. Data were analyzed using interpretative phenomenological analysis and interpretation guided by a behavior-change model to enhance understanding of participant experiences. Two patient advisors and care partners contributed to data analysis and interpretation. Cross-sectional survey: Using the same eligibility criteria as the qualitative study, 21 participants with PD who participated in the most recent community-based exercise program completed self-reported surveys assessing symptom burden and quality of life. Questionnaires assessing symptom burden (Non-Motor Symptoms Scale, NMSS); Freezing of Gait, FOG); and quality of life (Quality of Life in Neurological Disorders, Neuro-QoL) were completed following the qualitative interviews. Results: Qualitative Study: Participants identified the PD-specific nature of the program, the group setting, and the presence of a supportive trainer as key motivators to long term adherence. Barriers to participation, especially transportation and cost, were also reported. Three pre-program themes centered on diagnostic challenges, the burden of non-motor symptoms, and medication side effects. Four post-program themes centred on the individual benefits of the program and highlighted perceived improvements in physical symptoms, emotional well-being, social connectedness, and reduced self-consciousness. Overall, participants described this PD-specific group program as beneficial and empowering, with many recommending increased public awareness and expanded access to similar community-based programs. Cross-sectional survey: Twenty-one participants completed the survey (median age: 71 years [IQR: 65–77]71.4% male). The median time since diagnosis of PD was 6 years [IQR: 2-7], with most participants at H&Y stage I (n=12). The median duration of participation in the program was 24 months [IQR: 18-60]. Symptom burden was generally mild, with median NMSS and FOG-Q scores of 19 (IQR: 10–27) and 3 (IQR: 1–6), respectively. Neuro-QoL T-scores reflected average to above-average performance in some positive domains such as cognition and social roles. However, in some negative domains such as stigma and emotional-behavioral dysfunction participants scores were higher (i.e. worse). Conclusion: This thesis highlighted that a PD-specific, community-based exercise program supported long-term participation through tailored programming and group-based support. Qualitative findings identified barriers such as accessibility, alongside facilitators including perceived improvements in symptoms, emotional well-being, and social connectedness. Cross-sectional results showed that most participants were in early-stage PD, had engaged with the program for an average of 24 months, and reported mild non-motor symptom burden. Future studies using objective measures, larger sample sizes, and longitudinal designs are needed to validate these findings.

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