DOI: 10.5255/ukda-sn-854876
title: Care for Late Stage Parkinsonism, 2014-2019

description: 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.