Exploring Experiences with Non-Motor Symptoms (NMS) of Parkinson's Disease

Research Objectives: To gain an understanding of the non-motor symptoms that individuals with PD experience
To understand what types of resources were given to individuals with PD regarding NMS

Design: 12 question mixed-methods survey was used to collect data regarding participants with PD's self-reported experiences with and education about the NMS of PD

Setting: Attended various Rock Steady Boxing locations and online, provided the opportunity to complete the survey on paper, online, or verbally to be translated to paper

Participants: 40 participants having self-report having a diagnosis of PD, at least 18,

Interventions: This study was conducted in order to gain an understanding of the NMS that individuals with Parkinson’s disease experience, as well as the educational resources provided by healthcare professionals.

Main Outcome Measures: .

Results: The most common NMS: fatigue (87.5%), sleep difficulties (65.0%), & memory difficulties (62.5%), 65% reported. NMS impacted daily activities with common themes of fatigue, communication difficulties, & cognitive challenges, 55% reported PD impact on social relationships. Some types of healthcare providers addressed NMS with participants more than others, but a notable gap remains 37.5% strongly or somewhat disagreed that PD education has adequately prepared them for their actual experiences and symptoms, 22.5% strongly or somewhat disagreed with feeling they have enough resources and support to face their PD as it evolves. 71% somewhat or strongly agreed that PD resources give them the motivation to engage with the community and/or with PD management, 27.5% noted a need for more education on the disease, and 20% noted a need for more community-based resources.

Conclusions: The data revealed several patterns indicating exercise and community programs as important factors in managing Parkinson’s disease; meanwhile, it also revealed the relationship of the education provided by healthcare providers. It most notably recognized patterns of varying frequencies and severities of non-motor symptoms among participants. This study provides data on first-hand experiences of individuals with PD; therefore, providing occupational therapists and other healthcare professionals with significant knowledge regarding the importance of addressing NMS.

Author(s) Disclosures: no conflicts