Care for Late Stage Parkinsonism, 2014-2019

Whilst the clinical problems, treatment and care needs of people with Parkinson’s disease in the early stages are increasingly well known, there is little information on those in the late stages who have the greatest needs. This project aimed to assess the clinical problems and impact of late stage Parkinsonism on patients and their carers, examine what their medical and social needs are, as well as their use, costs and impact of, health-care in six European countries.
These aims were achieved through the following tasks: a full systematic reviews of the existing literature; qualitative interviews were conducted with people with late stage parkinsonism and with carers, and in-depth assessments were performed in a large, representative number of 692 individuals affected by late stage parkinsonism and their carers. We also conducted a randomised trial examining the impact of a specialist review and recommendations to the primary physician. The study also examined the usefulness of existing assessment tools in the population of patients with late stage parkinsonism.
Bringing together the information from these different work streams, we identified the key problems encountered by people with late stage parkinsonism and their carers, including a range of motor and non-motor problems, of which problems Off-periods, autonomic features, cognitive impairment and neuropschiatric features such as delusions, hallucinations, apathy, depression and dementia were most frequent and severe. These were common in patients at home but particularly those in nursing homes, who were often given other treatments for these problems in addition to the antiparkinsonian medications. The qualitative interviews provided information on what support and care needs exist from patients‘ and carers‘ points of view. In addition to the clinical problems, and access to treatments for these, the interviews revealed that the complex needs of this populations require a more flexibility and personalised service than is currently received. It was also found that support for patients in their own homes and positive relationships with healthcare providers help those with Parkinson’s keep independent and maintain a sense of themselves, and that the provision of information help them maintain some control and stay at home. Family caregivers were the main co-ordinators and monitors of care delivery, with significant impact on their own lives, demonstrated in the analysis of qualitative and quantitative data. The treatment trial identified deficiencies in the current model of management in this disease stage in the traditional secondary care model, including the diffiulties in providing information and advice that is translated into management changes, but showed that specialist input, despite the limitations in implementation, improves quality of life in late stage parkinsonism. Taking the information from the literature reviews and the quantitative and qualitative studies, we devised a new tool to assess patients with late stage parkinsonism in any setting to provide the most appropriate care for patients in this complex late disease stage. Further data analysis is ongoing on longitudinal changes.
Our data will provide the basis for better provision of treatment and care of this underserved population and support care for this severely affected patient group.<p>The aim of this project is to evaluate the needs and provision of care for patients in the late stages of Parkinsonism and their carers in several European countries, to compare the effectiveness of different health and social care systems, and to lay the foundation for improved outcomes in this population. We will undertake an in-depth assessment of patients and their care arrangements in a population recruited through networks in six European countries. The systems and procedures that are used in the provision of care will be reviewed through a systematic literature review, interviews and assessments of patients, carers and health care providers, and through a trial comparing assessment by a specialist with management suggestions, guidance and access to telephone advice to that of usual care.
Through interviews, questionnaire assessment and review of current health-care and social care arrangement, we will assess the needs, provision of care and use of health-care resources, and their impact on patient and carer outcomes in different countries. National and regional databases will also be interrogated to identify current practice and use of health-care resources and drug usage. A systematic literature review of the evidence for effective management strategies, analysis of the study data, and evaluation of change in outcomes following specialist review will provide the basis for recommendations in the management of late stage Parkinsonism. We will also evaluate potentially useful outcome measures for use in this patient group.
In addition to charting the needs and current care provision for late stage Parkinsonism in different European countries, its cost and effectiveness, and an analysis of health-care and social care predictors of improved outcome, the project will produce a platform for the assessment of patients with late stage Parkinsonism, their current treatment and care provision, as well as guidelines on the management of this late disease phase.</p>

虽然帕金森病（Parkinson’s disease）早期患者的临床问题、治疗及护理需求已日益明确，但对于需求最为迫切的晚期患者，相关信息却十分匮乏。本项目旨在评估晚期帕金森综合征（late-stage Parkinsonism）对患者及其护理者的临床问题与影响，探究他们的医疗及社会需求，以及六个欧洲国家的医疗服务使用情况、成本及其影响。

上述目标通过以下任务实现：对现有文献进行全面系统综述（systematic review）；对晚期帕金森综合征患者及护理者开展定性访谈；对692名具有代表性的晚期帕金森综合征患者及其护理者进行深度评估；开展随机对照试验，探究专科医生评估及向初级医师提出建议的效果；评估现有评估工具在晚期帕金森综合征患者群体中的适用性。

综合各工作流的信息，我们明确了晚期帕金森综合征患者及其护理者面临的关键问题，包括一系列运动与非运动障碍，其中“关期”（Off-periods）、自主神经功能异常、认知障碍及神经精神症状（如妄想、幻觉、淡漠、抑郁与痴呆）最为常见且严重。这些问题在居家患者中普遍存在，而养老院患者尤为突出——他们除抗帕金森药物外，常因这些问题接受其他治疗。定性访谈从患者与护理者视角揭示了其支持与护理需求：除临床问题及治疗可及性外，该群体的复杂需求需要比当前更具灵活性与个性化的服务。研究还发现，居家患者获得的支持及与医疗提供者的积极关系有助于维持其独立性与自我认同感，而信息提供则帮助他们保持一定的掌控感并留在家里。家庭护理者是护理服务的主要协调者与监督者，其自身生活受到显著影响，这一点在定性与定量数据分析中均得到体现。治疗试验表明，传统二级医疗模式下的当前管理模式在该疾病阶段存在不足，包括难以将信息与建议转化为管理变革；但尽管实施存在局限，专科医生的介入仍能改善晚期帕金森综合征患者的生活质量。基于文献综述及定量、定性研究结果，我们设计了一种新工具，可在任何场景下评估晚期帕金森综合征患者，为该复杂疾病晚期患者提供最适宜的护理。目前，纵向变化的进一步数据分析仍在进行中。

我们的数据将为改善这一服务不足群体的治疗与护理提供基础，并为该重度受影响患者群体的护理提供支持。

本项目旨在评估多个欧洲国家晚期帕金森综合征患者及其护理者的需求与护理服务提供情况，比较不同医疗及社会护理系统的有效性，并为改善该群体的结局奠定基础。我们将通过六个欧洲国家的网络招募研究人群，对患者及其护理安排进行深度评估。护理服务提供的系统与流程将通过以下方式进行审查：系统文献综述、对患者、护理者及医疗提供者的访谈与评估，以及一项比较专科医生评估（含管理建议、指导及电话咨询可及性）与常规护理效果的试验。

通过访谈、问卷评估及对当前医疗与社会护理安排的审查，我们将评估不同国家患者及护理者的需求、护理服务提供情况、医疗资源使用情况及其对结局的影响。我们还将查询国家及区域数据库，以明确当前实践、医疗资源使用及药物使用情况。对有效管理策略证据的系统文献综述、研究数据分析及专科医生评估后结局变化的评估，将为晚期帕金森综合征管理建议提供依据。我们还将评估适用于该患者群体的潜在有效结局指标。

除描绘不同欧洲国家晚期帕金森综合征患者的需求、当前护理服务提供情况、成本与有效性，以及分析医疗与社会护理中改善结局的预测因素外，本项目还将构建一个评估平台（用于晚期帕金森综合征患者、其当前治疗与护理服务提供情况），并制定该疾病晚期阶段的管理指南。