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Neuropsychiatr Dis Treat. 2019 Aug 5;15:2205-2212. doi: 10.2147/NDT.S213917. eCollection 2019.

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

Author information

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

Abstract

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:

anxiety; cognition; delusions; depression; hallucinations; sleep; treatment

Conflict of interest statement

NH reports personal fees from AbbVie, ACADIA, Adamas, Eli Lilly, Parkinson Study Group, Sunovion, UCB, and Voyager, outside the submitted work. RAH reports personal fees or other support from AbbVie Inc, Acorda Therapeutics, ACADIA Pharmaceuticals, Adamas Pharmaceuticals, Alphasights, ApoPharma, Back Bay Life Science, Baron Capital, Biotie Therapies, Cerecor Inc., ClearView Healthcare Partners, CNS Ratings, LLC., Cynapsus Therapeutics, DDB Health LLC, Decision Resources Group, eResearch Technology, Extera Partners, GE Healthcare, Health Advances, Guidepoint Global, HealthLogix, Health and Wellness Partners, Hepatares Therapeutics, Impax Laboratories, Impel Neuropharma, Intec Pharma Ltd., IQVIA, Jazz Pharmaceuticals, Kashiv Pharma LLC, Kyowa Kirin Pharmaceutical Development, Ltd., Life Sciences, Lundbeck LLC, The Lockwood Group, MEDACorp, MEDIQ, Medscape, Michael J. Fox Foundation, Mitsubishi Tanabe Pharmaceuticals, Movement Disorder Society, National Institutes of Health, Neurocea LLC, Neurocrine Biosciences, Neuroderm, Neuropore Therapies, Parkinson Study Group, Partner’s Healthcare, Peerview Press, Penn Technology Partnership, Pennside Partners, Perception OpCo, Precision Effect, Pfizer, Inc., Pharma Two B, Phase Five Communications, Putnam Associates, Quintiles, Regenera Pharma, RMEI Medical Education for Better Outcomes, SAI Med Partners LLC, Sarepta Therapeutics, Schlesinger Associates, Scion Neurostim, LLC, Seagrove Partners, LLC, Seelos, Sunovion Pharmaceuticals, Sun Pharma, Teva Pharmaceutical Industries, US WorldMeds, Vista Research, WebMD, Windrose Consulting Group, AstraZeneca, Axovant Sciences, Biogen Inc., Cavion, Enterin Inc., Intec Pharma Ltd, NeuroDerm Ltd., Lundbeck, Dart NeuroScience LLC, Prexton Therapeutics, Revance Therapeutics Inc., Sunovion Pharmaceuticals, outside the submitted work. The authors report no other conflicts of interest in this work.

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