What People with Parkinson's Disease Want

J Parkinsons Dis. 2020;10(s1):S5-S10. doi: 10.3233/JPD-202107.

Abstract

Parkinson's disease is an incurable, progressive neurodegenerative disease. This condition is complicated by the varying symptoms in individuals who differ in age of onset, symptoms, progression of disease, response to treatment and prognosis. In this paper, we focus on quality of life achieved through a combination of comprehensive health care, continuous support, and self care. Determining what people with Parkinson's disease want is like assembling multiple puzzles simultaneously. While we surmise that patient centered care, support programs, access to comprehensive health care, and relevant symptom control are pieces of this puzzle, more longitudinal studies- which are observational in nature and correlate the impact of symptoms with patients' reported needs- are necessary.

Keywords: Patient-centered care; fatigue; movement disorders; quality of life; self-care; sleep wake disorders.

Publication types

  • Review

MeSH terms

  • Humans
  • Parkinson Disease / psychology*
  • Parkinson Disease / therapy*
  • Patient-Centered Care / methods
  • Psychosocial Support Systems*
  • Quality of Life / psychology*
  • Self Care / methods
  • Self Care / psychology*