The Perspectives of Patients with Parkinson's Disease: A Systematic Review and Thematic Synthesis

Abstract

Background: Parkinson’s disease has considerable impact on the quality of life of both patients and their caregivers. Patients’ perspectives are a source of vital knowledge that informs health professionals’ ability to provide individualised and patient-centered care. The aim of this systematic review was to identify the perspectives of patients with Parkinson’s disease on treatment, care and rehabilitation.Methods: We conducted a systematic review and searched the following electronic bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycInfo and Scopus for original studies published before June 2020. Grey literature was searched at www.parkinson.org, http://www.epda.eu.com, www.apdaparkinson.org and in the OpenSIGLE and HMIC databases. We included studies focusing on patients with Parkinson’s disease aged 18 or older that reported patients’ perspectives on treatment, care and rehabilitation. Results were analysed using thematic synthesis. Results: Ten studies were included, each of them applying qualitative methods and including between 1 and 28 patients. A total of 156 codings led to 17 descriptive themes which resulted in three analytic themes: Significance of self, Significance of informal caregivers and peers, and Significance of professionals.Conclusions: Our findings could be important in helping healthcare professionals plan and deliver treatment, care and rehabilitation based on patients’ priorities in the context of suffering from a chronic disease. The results might also guide future research regarding patient perspectives, as well as how and why to incorporate patients’ perspectives in healthcare delivery. Systematic review registration: The protocol was registered in Prospero (183551).