Study protocol: Care of Late-Stage Parkinsonism (CLaSP): A longitudinal cohort study 11 Medical and Health Sciences 1117 Public Health and Health Services 11 Medical and Health Sciences 1109 Neurosciences
BMC Neurol. 2018-11-05; 18(1):
DOI: 10.1186/s12883-018-1184-3
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1. BMC Neurol. 2018 Nov 5;18(1):185. doi: 10.1186/s12883-018-1184-3.
Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort
study.
Balzer-Geldsetzer M(1)(2), Ferreira J(3), Odin P(4), Bloem BR(5), Meissner
WG(6)(7), Lorenzl S(8)(9), Wittenberg M(10), Dodel R(1)(2), Schrag A(11).
Author information:
(1)Department of Neurology, Philipps-University Marburg, Marburg, Germany.
(2)Department of Geriatric Medicine, University Hospital Essen, Essen, Germany.
(3)Instituto de Medicina Molecular Universidad di Lisboa, Lisboa, Portugal.
(4)Department of Neurology, Lund University Hospital, Lund, Sweden.
(5)Donders Institute for Brain, Cognition and Behaviour, Department of Neurology,
Radboud University Medical Center, Nijmegen, The Netherlands.
(6)Service de Neurologie, CHU de Bordeaux, 33000, Bordeaux, France.
(7)Institut des Maladies Neurodégénératives, University de Bordeaux, UMR 5293,
33000, Bordeaux, France.
(8)Interdisziplinäres Zentrum für Palliativmedizin und Klinik für Neurologie
Universität München – Klinikum Großhadern, Munich, Germany.
(9)Institute of Nursing Science and -Practice, Salzburg, Austria.
(10)Coordinating Centre for Clinical Trials (KKS), Philipps-University Marburg,
Marburg, Germany.
(11)UCL Institute of Neurology, University College London, Royal Free Campus,
Rowland Hill street, NW3 2PF, London, UK. .
BACKGROUND: Parkinson’s disease (PD) is a chronic progressive disorder leading to
increasing disability. While the symptoms and needs of patients in the early
stages of their disease are well characterized, little information is available
on patients in the late stage of the disease.
METHODS/DESIGN: The Care of Late-Stage Parkinsonism (CLaSP) study is a
longitudinal, multicenter, prospective cohort study to assess the needs and
provision of care for patients with late stage Parkinsonism and their carers in
six European countries (UK, France, Germany, Netherlands, Portugal, Sweden). In
addition, it will compare the effectiveness of different health and social care
systems. Patients with Parkinsonism with Hoehn and Yahr stage ≥IV in the
“On”-state or Schwab and England stage 50% or less are evaluated at baseline and
three follow-up time-points. Standardised questionnaires and tests are applied
for detailed clinical, neuropsychological, behavioural and health-economic
assessments. A qualitative study explores the health care needs and experiences
of patients and carers, and an interventional sub-study evaluates the impact of
specialist recommendations on their outcomes.
DISCUSSION: Through the combined assessment of a range of quantitative measures
and qualitative assessments of patients with late stage parkinsonism, this study
will provide for the first time comprehensive and in-depth information on the
clinical presentation, needs and health care provision in this population in
Europe, and lay the foundation for improved outcomes in these patients.
TRIAL REGISTRATION: The protocol was registered at ClinicalTrials.gov as
NCT02333175 on 07/01/2015.
DOI: 10.1186/s12883-018-1184-3
PMCID: PMC6217790
PMID: 30396331 [Indexed for MEDLINE]