The perspectives of patients with Parkinson's disease: A qualitative systematic review

Abstract

Background and objective: 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. Objective: The aim of this systematic review was to identify the perspectives of patients with Parkinson’s disease on treatment, care and rehabilitation.

Methods: The authors conducted a systematic review and searched the following bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycInfo and Scopus for original studies, in June 2020 (renewed December 21, 2021). 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: Thirteen studies were included, each of them applying qualitative methods and including between 1 and 95 patients. The authors identified 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.