In Their Own Words: Fears Expressed by People with Parkinson’s Disease in an Online Symptom Database

Author:

Mantri Sneha1,Purks Jennifer L.2,Kinel Daniel3,Arbatti Lakshmi4,Hosamath Abhishek4,Allen Allison1,Amara Amy5,Anderson Karen6,Chahine Lana M.7,Eberly Shirley8,Mathur Soania9,Standaert David10,Oakes David8,Weintraub Daniel11,Shoulson Ira24,Marras Connie12

Affiliation:

1. Department of Neurology, Duke University, Durham, NC, USA

2. Department of Neurology, University of Rochester, Rochester, NY, USA

3. Department of Neurology, Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA

4. Grey Matter Technologies, A Wholly Owned Subsidiary of Modality.ai, San Francisco, CA, USA

5. Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

6. Department of Psychiatry and Department of Neurology, Georgetown University, Washington, DC, USA

7. Department of Neurology, University of Pittsburgh, Pittsburgh, PA, USA

8. Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA

9. PD Avengers, Toronto, Canada

10. Department of Neurology, University of Alabama at Birmingham, Birmingham, AL, USA

11. Departments of Psychiatry and Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

12. Edmond J. Safra Program in Parkinson’s Disease, University Health Network, University of Toronto, Toronto, Canada

Abstract

Parkinson’s disease (PD) carries substantial psychosocial burden. Using a database of responses by people with PD reporting up to five “most bothersome problems,” we identified 225 fear-based verbatims, which were organized using the framework method into 26 categories. Commonly-reported fears included uncertainty of progression (n = 60, 26.7%), fear of future cognitive impairment (n = 24, 10.7%) and fear of becoming a burden on others (n = 23, 10.2%). Fears in PD are wide-ranging and can constitute the most bothersome aspect of the condition. These data can be used to design interventions to lessen the psychosocial burden of PD.

Publisher

IOS Press

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