Impact of non-motor symptoms in Parkinson’s disease: a PMDAlliance survey

Authors Hermanowicz N, Jones SA, Hauser RA

Received 30 April 2019

Accepted for publication 11 June 2019 

Published 5 August 2019 Volume 2019:15 Pages 2205—2212 

DOI https://doi.org/10.2147/NDT.S213917

¹Department of Neurology, Parkinson’s Disease and Movement Disorders Program, University of California, Irvine, CA, USA; ²Parkinson and Movement Disorder Alliance (PMDalliance), Tucson, AZ, USA; ³Department of Neurology, USF Health Parkinson’s Disease and Movement Disorders Center, Parkinson Foundation Center of Excellence, Tampa, FL, USA

Purpose: Parkinson’s disease (PD) is associated with non-motor symptoms (NMS) that can cause progressive disability and impact quality of life of people with PD (PwP) and increase burden on care partners. This survey was designed to evaluate the prevalence, impact, and educational preferences regarding NMS on PwP and their care partners.

Patients and methods: A 17-question survey was sent to the total membership of PMDAlliance, a nonprofit organization reaching 3,685 households of PwP. Care partners and other interested individuals could also respond. The survey was conducted using Survey Monkey, an online survey platform, and included distinct questions for respondents with and without NMS.

Results: A total of 700 individuals responded to the survey. Of the respondents, 378 (54%) were care partners and 287 (41%) were PwP. About 90% of the respondents reported having experience with NMS in PwP, including sleep problems (84%), cognitive symptoms (76%), anxiety (65%), depression (56%), hallucinations (40%), and delusions (23%). NMS in PwP were reported by more care partners (97%) than PwP (80%). NMS had at least some impact on quality of life for 84% of the respondents; 48% indicated that NMS represented a greater challenge than motor symptoms. Care partners were more likely than PwP to report that NMS were more challenging than motor symptoms (58% vs 32%). Respondents with and without NMS indicated a desire for NMS education.

Conclusion: This survey underscores the significant impact of NMS on the quality of life of PwP and highlights the need for improved recognition and education about its effects.

Keywords: sleep, cognition, anxiety, depression, hallucinations, delusions, treatment

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