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

J Parkinsons Dis. 2024;14(4):865-872. doi: 10.3233/JPD-230305.

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.

Keywords: Parkinson’s disease; qualitative; quality of life.

MeSH terms

  • Aged
  • Aged, 80 and over
  • Cognitive Dysfunction / etiology
  • Cost of Illness
  • Databases, Factual*
  • Fear*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Parkinson Disease* / psychology