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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 ssessments 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 healthcare 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.
Participating Centres
This European consortium offers collaboration of several established research centres and will be coordinated by the UK partner.
MAJOR PARTICIPANTS
1. University College London, UK
2. University of Marburg, Germany
3. University of Lisbon, Portugal
4. University of Nijmegen, The Netherlands
5. University of Lund, Sweden
6. University Hospital Bordeaux, France
7. University of Munich, Germany
The configuration and members of this consortium ensure that an adequate number of patients with late stage Parkinsonism are included in the study, covering several areas with the EU with different health-care systems. These differences provide the opportunity to assess the comparative effectiveness of different systems. The members have been chosen on the basis of their expertise and experience in undertaking large cohort studies as well their expertise in Parkinson's diagnosis, management and research. The consortium also has expertise in health economic evaluations and outcomes measures research as well as palliative care.