Balzer-Geldsetzer Monika, Ferreira Joaquim, Odin Per, Bloem Bastiaan R, Meissner Wassilios G, Lorenzl Stefan, Wittenberg Michael, Dodel Richard, Schrag Anette
Department of Neurology, Philipps-University Marburg, Marburg, Germany.
Department of Geriatric Medicine, University Hospital Essen, Essen, Germany.
BMC Neurol. 2018 Nov 5;18(1):185. doi: 10.1186/s12883-018-1184-3.
Parkinson's disease (PD) is a chronic progressive disorder leading to increasing disability. While the symptoms and needs of patients in the early stages of their disease are well characterized, little information is available on patients in the late stage of the disease.
METHODS/DESIGN: The Care of Late-Stage Parkinsonism (CLaSP) study is a longitudinal, multicenter, prospective cohort study to assess the needs and provision of care for patients with late stage Parkinsonism and their carers in six European countries (UK, France, Germany, Netherlands, Portugal, Sweden). In addition, it will compare the effectiveness of different health and social care systems. Patients with Parkinsonism with Hoehn and Yahr stage ≥IV in the "On"-state or Schwab and England stage 50% or less are evaluated at baseline and three follow-up time-points. Standardised questionnaires and tests are applied for detailed clinical, neuropsychological, behavioural and health-economic assessments. A qualitative study explores the health care needs and experiences of patients and carers, and an interventional sub-study evaluates the impact of specialist recommendations on their outcomes.
Through the combined assessment of a range of quantitative measures and qualitative assessments of patients with late stage parkinsonism, this study will provide for the first time comprehensive and in-depth information on the clinical presentation, needs and health care provision in this population in Europe, and lay the foundation for improved outcomes in these patients.
The protocol was registered at ClinicalTrials.gov as NCT02333175 on 07/01/2015.
帕金森病（PD）是一种导致残疾不断加重的慢性进行性疾病。虽然疾病早期患者的症状和需求已得到充分描述，但关于疾病晚期患者的信息却很少。
方法/设计：晚期帕金森病护理（CLaSP）研究是一项纵向、多中心、前瞻性队列研究，旨在评估欧洲六个国家（英国、法国、德国、荷兰、葡萄牙、瑞典）晚期帕金森病患者及其照料者的护理需求和护理提供情况。此外，它还将比较不同卫生和社会护理系统的有效性。对处于“开”状态且霍恩和雅尔分期≥IV期或施瓦布和英格兰分期为50%及以下的帕金森病患者在基线和三个随访时间点进行评估。应用标准化问卷和测试进行详细的临床、神经心理学、行为和卫生经济学评估。一项定性研究探讨患者和照料者的医疗保健需求及经历，一项干预性子研究评估专家建议对其结果的影响。
通过对一系列定量指标的综合评估以及对晚期帕金森病患者的定性评估，本研究将首次提供关于欧洲该人群的临床表现、需求和医疗保健提供情况的全面而深入的信息，并为改善这些患者的治疗结果奠定基础。
该方案于2015年1月7日在ClinicalTrials.gov注册，注册号为NCT02333175。
