Back to Search Start Over

The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies

Authors :
Simon D.S. Fraser
Qian Yue Tan
Stephen Lim
Natalie J. Cox
Laura Coutts
Helen C. Roberts
Kinda Ibrahim
Source :
Journal of Parkinson's Disease. 11:1597-1617
Publication Year :
2021
Publisher :
IOS Press, 2021.

Abstract

Background High treatment burden is associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Identifying factors that impact treatment burden in Parkinson’s disease can offer insights into strategies to mitigate them. Objective To explore the experiences of treatment burden among people with Parkinson’s disease (PwP) and their caregivers. Methods A systematic review of studies published from year 2006 was conducted. Qualitative and mixed-method studies with a qualitative component that relate to usual care in Parkinson’s disease were included. Quantitative studies and grey literature were excluded. Data synthesis was conducted using framework synthesis. Results 1757 articles were screened, and 39 articles included. Understanding treatment burden in PwP and caregivers was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson’s disease are: 1) work and challenges of taking medication; 2) healthcare provider obstacles including lack of patient-centered care, poor patient-provider relationships, lack of care coordination, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about health and challenges with information provision. The treatment burden led to physical and mental exhaustion of self-care and limitations on the role and social activities of PwP and caregivers. Conclusion: There are potential strategies to improve the treatment burden in Parkinson’s disease at an individual level such as patient-centered approach to care, and at system level by improving access and care coordination between services. Future research is needed to determine the modifiable factors of treatment burden in Parkinson’s disease.

Details

ISSN :
1877718X and 18777171
Volume :
11
Database :
OpenAIRE
Journal :
Journal of Parkinson's Disease
Accession number :
edsair.doi.dedup.....72e0b1a441dc4cfc1a8b0ca3b2c46866
Full Text :
https://doi.org/10.3233/jpd-212612