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

Research output: Contribution to journalArticle

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 "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.

Details

Authors
  • Monika Balzer-Geldsetzer
  • Joaquim Ferreira
  • Per Odin
  • Bastiaan R. Bloem
  • Wassilios G. Meissner
  • Stefan Lorenzl
  • Michael Wittenberg
  • Richard Dodel
  • Anette Schrag
Organisations
External organisations
  • Philipp University of Marburg
  • University Hospital Essen
  • University of Lisbon
  • Skåne University Hospital
  • Radboud University Nijmegen
  • Centre Hospitalier Universitaire de Bordeaux
  • University of Bordeaux
  • University Hospital Munich
  • University College London
  • Paracelsus Private Medical University of Salzburg
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Neurology

Keywords

  • Care provision, Health-economic evaluation, Health-related quality of life, Late stage parkinsonism, Non-motor complications, Patient-reported outcomes, Quality of care
Original languageEnglish
Article number185
JournalBMC Neurology
Volume18
Issue number1
Publication statusPublished - 2018 Nov 5
Publication categoryResearch
Peer-reviewedYes