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Care of Late Stage Parkinsonism is a multicentre study carried out in 6 European countries. In the UK, we have been working together with the National Health Service, care homes, and patient organizations.
The study is funded through the EU Joint Programme - Neurodegenerative Diseases Research (JPND) initiative.
Reason for the study
The aim of this study is to determine the needs of those patients in the late stages of parkinsonism and their carers, how they are currently met in different European countries, and how their care could be improved. We suspect that there are number of unmet needs and that these can be addressed better. We therefore assess the problems and needs of patients with late stage parkinsonism and their carers through examination and questions, and interrogate existing health care databases. We also study the effect of a specialist assessment with treatment recommendations compared to those who receive their normal care.
Research question
What is the impact of late stage Parkinsonism on patients and their carers and families and what are their medical and social needs, costs and use of health-care resources?
How appropriate and valid are the existing assessment tools in this population?
How do disability and disease severity milestones (psychosis, dementia, falls, wheelchair-bound, institutionalisation) progress over time in these patients?
What are the health-care and social determinants of outcome once disease variables are accounted for?
What is the impact of different health-care pathways?
What are management strategies that have been shown to be effective in late stage Parkinsonism?
What is the impact of a specialist review with management recommendations, provision of guidance and access to telephone assistance?
The Research Study
This is a longitudinal, multicentre, observational cohort study in six European countries with different health-care and social care models. It uses clinical assessments, questionnaires and interviews with patients, carers and health care staff, and interrogation of existing databases.
Study Participants
(1) Patients who have late-stage Parkinsonism classified according to Hoehn and Yahr stage (HY) IV or V in the “On”-state or have developed significant disability (Schwab and England stage 50% or less) in “On”, and (2) their informal carers.
Inclusion Criteria: Late stage Parkinsonism will be defined as patients who are in Hoehn and Yahr stages IV or V during On, or have developed significant disability (Schwab and England stage 50% or less) in “On” and have a disease duration of at least 7 years.
Exclusion criteria: We will exclude patients with PD in Hoehn and Yahr stages I-III., and patients with symptomatic Parkinsonism such as normal pressure hydrocephalus or drug-induced Parkinsonism (onset following treatment with drugs known to cause Parkinsonism), except if persisting following discontinuation of the causative drug. We will exclude patients with Parkinsonism with a clear history of dementia occurring before the onset of Parkinsonism as care pathways for this patient group may differ from that of patients initially presenting with motor problems. In addition, the occurrence of Parkinsonism in the context of advanced dementia is likely to be recorded unreliably.
Care homes have been invited to contribute to the interview if they would like to. Current management arrangements have been explored, as well as knowledge of the needs and experiences of caring for people with Parkinsonism from the perspective of the patient, carers and health care professionals. We hope to learn more about the difficulties of both providing and accessing care for people with Parkinsonism and how this can be improved.
Governance
The study has been approved by NRES Committee London – Camden and Islington
Research Ethics committee.
Contact details
Please contact the CLASP study team in the country of your residence for more information by following this link.
For general enquiries, please contact: clasp@ucl.ac.uk
Phone: +(44) 207 794 0500 ext 31218
Address: CLASP study, Department of Clinical and Movement Neurosciences, University College London, Royal Free Hospital, Rowland Hill Street, London, NW3 2PF