Academic Geriatric Medicine, Faculty of Medicine, University of Southampton, Southampton, UK.
National Institute for Health Research Applied Research Collaboration Wessex, University of Southampton, Southampton, UK.
J Parkinsons Dis. 2021;11(4):1597-1617. doi: 10.3233/JPD-212612.
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.
治疗负担高与依从性差、资源浪费、生活质量差和健康结局不佳有关。确定影响帕金森病治疗负担的因素可以为减轻这些负担的策略提供思路。
探讨帕金森病患者（PwP）及其照顾者的治疗负担体验。
对 2006 年以来发表的研究进行了系统回顾。纳入了与帕金森病常规护理相关的定性和混合方法研究，其中包含定性部分。排除了定量研究和灰色文献。使用框架综合法进行数据综合。
共筛选出 1757 篇文章，其中 39 篇文章被纳入。在任何纳入的研究中，了解 PwP 和照顾者的治疗负担并不是主要目的。帕金森病治疗负担的主要问题有：1）工作和服药挑战；2）医疗保健提供者障碍，包括缺乏以患者为中心的护理、医患关系不佳、缺乏护理协调、组织结构僵化、服务获取受限以及在护理院或医院环境中存在问题；3）了解健康状况和信息提供方面的挑战。治疗负担导致 PwP 和照顾者自我护理的身心疲惫，限制了他们的角色和社会活动。
有一些潜在的策略可以减轻帕金森病的治疗负担，例如以患者为中心的护理方法，以及通过改善服务之间的获取和护理协调来改善系统水平。需要进一步研究确定帕金森病治疗负担的可调节因素。
