Objective: To explore the experiences of treatment burden among PwP and their caregivers.

Background: Treatment burden is defined as ‘the workload of healthcare and its impact on patient well-being and functioning’. High treatment burden in associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Clinical experience suggests PwP and their caregivers may experience high treatment burden. Identifying the factors that impact treatment burden in Parkinson’s can offer insight into strategies to mitigate them.

Method: Using five electronic databases, a systematic review of studies published from year 2006 was conducted. Qualitative and mixed-methods studies with a qualitative component that reported data from PwP and/or caregivers related to usual care in Parkinson’s were included. Quantitative studies and non-English articles were excluded. Data synthesis was conducted using framework synthesis.

Results: 1757 articles were screened, and 39 articles included. Understanding treatment burden was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson’s were: 1) work of taking multiple medications including frequent adjustment of medication timings and doses, precise medication timings with fixed schedules and challenges with medication adherence and side-effects; 2) healthcare provider obstacles including lack of patient-centered care and care coordination, poor patient-provider relationships, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about Parkinson’s 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: This review identified some experiences and factors influencing treatment burden In Parkinson’s. Potential strategies to improve the treatment burden in Parkinson’s could be implementing patient-centred approach to care (individual level) and improving access and care coordination between services (system level). Future research is needed to fully understand and determine the modifiable factors of treatment burden in Parkinson’s.
*The findings of this systematic review were presented at the British Geriatrics Society Autumn Meeting Presidents Round (25^th-27^th November 2020).*

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-experiences-of-treatment-burden-in-people-with-parkinsons-pwp-and-their-caregivers-a-systematic-review-of-qualitative-studies/