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

Article type: Research Article

Authors: Tan, Qian Yue^{a; b; *} | Cox, Natalie J.^{a; c} | Lim, Stephen E.R.^{a; b} | Coutts, Laura^a | Fraser, Simon D.S.^{b; d} | Roberts, Helen C.^{a; b; c} | Ibrahim, Kinda^{a; b}

Affiliations: [a] Academic Geriatric Medicine, Faculty of Medicine, University of Southampton, Southampton, UK | [b] National Institute for Health Research Applied Research Collaboration Wessex, University of Southampton, Southampton, UK | [c] National Institute for Health Research Southampton Biomedical Research Centre, University of Southampton and University Hospital Southampton NHS Trust, Southampton, UK | [d] School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK

Correspondence: [*] Correspondence to: Qian Yue Tan, Academic Geriatric Medicine, Mailpoint 807, Southampton General Hospital, Southampton SO16 6YD, UK. Tel.: +442381 206126; E-mail: [email protected].

Abstract: BackgroundHigh 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. ObjectiveTo explore the experiences of treatment burden among people with Parkinson’s disease (PwP) and their caregivers. MethodsA 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. Results1757 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.

Keywords: Treatment burden, burden of treatment, Parkinson’s disease, caregivers, review, qualitative, experience

DOI: 10.3233/JPD-212612

Journal: Journal of Parkinson's Disease, vol. 11, no. 4, pp. 1597-1617, 2021