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Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study

Balzer-Geldsetzer, Monika; Ferreira, Joaquim; Odin, Per LU ; Bloem, Bastiaan R.; Meissner, Wassilios G.; Lorenzl, Stefan; Wittenberg, Michael; Dodel, Richard and Schrag, Anette (2018) In BMC Neurology 18(1).
Abstract

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... (More)

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.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Care provision, Health-economic evaluation, Health-related quality of life, Late stage parkinsonism, Non-motor complications, Patient-reported outcomes, Quality of care
in
BMC Neurology
volume
18
issue
1
publisher
BioMed Central
external identifiers
  • scopus:85056101651
ISSN
1471-2377
DOI
10.1186/s12883-018-1184-3
language
English
LU publication?
yes
id
07164d54-6730-409f-983e-d549c83ddf43
date added to LUP
2018-11-22 10:58:07
date last changed
2019-01-06 14:16:42
@article{07164d54-6730-409f-983e-d549c83ddf43,
  abstract     = {<p>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.</p>},
  articleno    = {185},
  author       = {Balzer-Geldsetzer, Monika and Ferreira, Joaquim and Odin, Per and Bloem, Bastiaan R. and Meissner, Wassilios G. and Lorenzl, Stefan and Wittenberg, Michael and Dodel, Richard and Schrag, Anette},
  issn         = {1471-2377},
  keyword      = {Care provision,Health-economic evaluation,Health-related quality of life,Late stage parkinsonism,Non-motor complications,Patient-reported outcomes,Quality of care},
  language     = {eng},
  month        = {11},
  number       = {1},
  publisher    = {BioMed Central},
  series       = {BMC Neurology},
  title        = {Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study},
  url          = {http://dx.doi.org/10.1186/s12883-018-1184-3},
  volume       = {18},
  year         = {2018},
}