Comparing participation outcome over time across international stroke cohorts: outcomes and methods

Daan Verberne, Tamara Tse, Thomas Matyas, Carolyn Baum, Marcel Post, Leeanne Carey, Caroline van Heugten

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objective: To enable a direct comparison of participation levels in the first year post-stroke, assessed by different outcome measures internationally. Design Two prospective stroke cohort studies following persons from stroke onset to 12 months post-stroke. Setting: Community. Participants: Persons with stroke (N=495), not living at a nursing home, from Australia STroke imAging pRevention and Treatment-Prediction and Prevention to Achieve optimal Recovery Endpoints after stroke (START-PrePARE; n=100) and the Netherlands (Restore4stroke; n=395). Interventions: Not applicable. Main Outcome Measures: Activity Card Sort-Australia and Utrecht Scale for Evaluation of Rehabilitation-Participation. Activity domains were matched across measures to find common denominators and original scoring methods were recoded, hereby enabling a direct comparison of retained activities. Results: Ninety-one (START-PrePARE) and 218 (Restore4stroke) persons with stroke were included for analyses. No major differences in background characteristics were observed between the cohorts; the Dutch cohort suffered from slightly more severe stroke. A higher level of participation was observed (radar charts) in the first months post-stroke for the Australian cohort than in the Dutch cohort, especially for unpaid work (P<.003). At 12 months post-stroke, participation levels were similar, without significant differences in retained activities using the defined common denominators (P>.003).ConclusionsAn international comparison of actual activities that persons re-engage in in the first year post-stroke was achieved using a new method and recoding of data. High levels of participation were observed in both cohorts. Unpaid work showed different frequencies at 2-3 months, contributing to different trajectories over time across cultures. Important insights were gained. Although valuable information is inevitably lost with recoding, the approach may assist future studies on the harmonization of data across cohorts, particularly for 1 of the key outcomes of stroke: participation.
Original languageEnglish
Pages (from-to)2096-2105
Number of pages10
JournalArchives of Physical Medicine and Rehabilitation
Volume100
Issue number11
Early online date31 May 2019
DOIs
Publication statusPublished - Nov 2019

Keywords

  • ACTIVITY-CARD-SORT
  • CLASSIFICATION
  • Comparative study
  • Cross-cultural comparison
  • DEPRESSIVE SYMPTOMS
  • Feasibility studies
  • HOSPITAL ANXIETY
  • LONG-TERM
  • QUALITY-OF-LIFE
  • RELIABILITY
  • Rehabilitation
  • STRUCTURED INTERVIEW
  • Social participation
  • Stroke
  • UTRECHT SCALE
  • VALIDITY

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