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.

尽管早期帕金森病（Parkinson’s disease）患者的临床问题、治疗及照护需求已日益明晰，但针对需求最为迫切的晚期帕金森综合征（late stage Parkinsonism）患者的相关信息却极为匮乏。本项目旨在评估晚期帕金森综合征对患者及其照料者的临床影响与负担，明确其医疗与社会需求，同时调研欧洲六国的医疗服务使用情况、成本及对卫生保健的影响。本研究通过以下任务达成上述目标：对现有文献开展全面系统综述（systematic reviews）；对晚期帕金森综合征患者及其照料者进行定性访谈（qualitative interviews），并对692名具有代表性的晚期帕金森综合征患者及其照料者开展深度评估；开展一项随机对照试验（randomised trial），评估专科医师向全科医生（primary physician）提交专业评估及建议的临床效果。此外，本研究还考察了现有评估工具在晚期帕金森综合征患者群体中的适用性。整合各研究环节的信息后，我们明确了晚期帕金森综合征患者及其照料者所面临的核心问题，涵盖一系列运动与非运动症状，其中以运动关闭期（Off-periods）、自主神经功能障碍（autonomic features）、认知障碍（cognitive impairment）及妄想、幻觉、情感淡漠、抑郁、痴呆等神经精神症状（neuropsychiatric features）最为常见且严重。这些问题在居家患者中已较为普遍，而养老院患者的症状尤为突出，此类患者除服用抗帕金森药物（antiparkinsonian medications）外，通常还需接受针对上述症状的其他治疗。定性访谈从患者与照料者的视角，揭示了其所需的支持与照护需求。除临床问题及治疗可及性外，访谈结果显示，该群体的复杂需求亟需比当前更为灵活的个性化服务。研究还发现，为居家患者提供支持、建立与医疗服务提供者的良好医患关系，有助于帕金森患者维持独立生活能力与自我认同感；而信息获取则可帮助患者维持对病情的掌控感，从而延缓入住机构的时间。家庭照料者（family caregivers）是照护服务协调与监管的核心主体，其自身生活也受到显著影响，这一点在定性与定量数据分析中均得到证实。治疗试验结果显示，传统二级医疗（secondary care）模式在该疾病阶段的管理存在诸多不足，包括难以提供可转化为治疗方案调整的信息与建议；但即便存在实施限制，专科医师的介入仍可改善晚期帕金森综合征患者的生活质量。结合文献综述、定量与定性研究的结果，我们开发了一款全新的评估工具，可在任意场景下对晚期帕金森综合征患者进行评估，从而为该复杂疾病晚期阶段的患者提供最适宜的照护方案。目前，针对纵向变化（longitudinal changes）的进一步数据分析仍在进行中。本研究数据将为改善这一服务不足群体（underserved population）的治疗与照护提供依据，为这类重症患者群体的照护工作提供支持。