Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
Department of Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, BS8 1NU, UK.
BMC Neurol. 2021 Jul 23;21(1):286. doi: 10.1186/s12883-021-02308-3.
Culminating evidence shows that current care does not optimally meet the needs of persons with parkinsonism, their carers and healthcare professionals. Recently, a new model of care was developed to address the limitations of usual care: Proactive and Integrated Management and Empowerment in Parkinson's Disease (PRIME Parkinson). From 2021 onwards, PRIME Parkinson care will replace usual care in a well-defined region in The Netherlands. The utility of PRIME Parkinson care will be evaluated on a single primary endpoint (parkinsonism-related complications), which reflects the health of people with parkinsonism. Furthermore, several secondary endpoints will be measured for four dimensions: health, patient and carer experience, healthcare professional experience, and cost of healthcare. The reference will be usual care, which will be continued in other regions in The Netherlands.
This is a prospective observational study which will run from January 1, 2020 until December 31, 2023. Before the new model of care will replace the usual care in the PRIME Parkinson care region all baseline assessments will take place. Outcomes will be informed by two data sources. We will use healthcare claims-based data to evaluate the primary endpoint, and costs of healthcare, in all persons with parkinsonism receiving PRIME Parkinson care (estimated number: 2,000) and all persons with parkinsonism receiving usual care in the other parts of The Netherlands (estimated number: 48,000). We will also evaluate secondary endpoints by performing annual questionnaire-based assessments. These assessments will be administered to a subsample across both regions (estimated numbers: 1,200 persons with parkinsonism, 600 carers and 250 healthcare professionals).
This prospective cohort study will evaluate the utility of a novel integrated model of care for persons with parkinsonism in The Netherlands. We anticipate that the results of this study will also provide insight for the delivery of care to persons with parkinsonism in other regions and may inform the design of a similar model for other chronic health conditions.
越来越多的证据表明，目前的护理方式无法满足帕金森病患者及其照护者和医疗保健专业人员的需求。最近，开发了一种新的护理模式来解决常规护理的局限性：帕金森病主动综合管理和赋权（PRIME Parkinson）。自 2021 年起，PRIME Parkinson 护理将在荷兰的一个明确界定的地区取代常规护理。PRIME Parkinson 护理的效用将通过单一的主要终点（帕金森病相关并发症）进行评估，该终点反映了帕金森病患者的健康状况。此外，还将测量四个维度的几个次要终点：健康、患者和照护者体验、医疗保健专业人员体验以及医疗保健成本。参考标准是在荷兰其他地区继续进行的常规护理。
这是一项前瞻性观察研究，将于 2020 年 1 月 1 日至 2023 年 12 月 31 日进行。在 PRIME Parkinson 护理区采用新的护理模式取代常规护理之前，将进行所有基线评估。结果将通过两个数据源告知。我们将使用基于医疗保健索赔的数据来评估接受 PRIME Parkinson 护理的所有帕金森病患者（估计人数：2000 人）的主要终点和接受荷兰其他地区常规护理的所有帕金森病患者的医疗保健成本（估计人数：48000 人）。我们还将通过每年进行基于问卷的评估来评估次要终点。这两个地区的参与者将随机抽取样本进行评估（估计人数：1200 名帕金森病患者、600 名照护者和 250 名医疗保健专业人员）。
这项前瞻性队列研究将评估一种新型综合护理模式在荷兰为帕金森病患者提供的效用。我们预计，这项研究的结果还将为其他地区为帕金森病患者提供护理提供见解，并可能为其他慢性健康状况的类似模式设计提供信息。
