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

doi:10.1016/j.apmr.2019.05.025

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^*

^*Corresponding author voor dit werk

EXtremities Pain Active lifestyle aNd Disability (EXPAND)

Onderzoeksoutput › Academic › peer review

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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).

Conclusions: An 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. (C) 2019 by the American Congress of Rehabilitation Medicine

Originele taal-2	English
Pagina's (van-tot)	2096-2105
Aantal pagina's	10
Tijdschrift	Archives of Physical Medicine and Rehabilitation
Volume	100
Nummer van het tijdschrift	11
DOI's	https://doi.org/10.1016/j.apmr.2019.05.025
Status	Published - nov.-2019

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@article{e6dacdd04ace4e868348b8aa7e86a201,

title = "Comparing Participation Outcome Over Time Across International Stroke Cohorts: Outcomes and Methods",

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).Conclusions: An 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. (C) 2019 by the American Congress of Rehabilitation Medicine",

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

author = "Daan Verberne and Tamara Tse and Thomas Matyas and Carolyn Baum and Marcel Post and Leeanne Carey and {van Heugten}, Caroline",

year = "2019",

month = nov,

doi = "10.1016/j.apmr.2019.05.025",

language = "English",

volume = "100",

pages = "2096--2105",

journal = "Archives of Physical Medicine and Rehabilitation",

issn = "0003-9993",

publisher = "W B SAUNDERS CO-ELSEVIER INC",

number = "11",

}

TY - JOUR

T1 - Comparing Participation Outcome Over Time Across International Stroke Cohorts

T2 - Outcomes and Methods

AU - Verberne, Daan

AU - Tse, Tamara

AU - Matyas, Thomas

AU - Baum, Carolyn

AU - Post, Marcel

AU - Carey, Leeanne

AU - van Heugten, Caroline

PY - 2019/11

Y1 - 2019/11

N2 - 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).Conclusions: An 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. (C) 2019 by the American Congress of Rehabilitation Medicine

AB - 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).Conclusions: An 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. (C) 2019 by the American Congress of Rehabilitation Medicine

KW - Comparative study

KW - Cross-cultural comparison

KW - Feasibility studies

KW - Rehabilitation

KW - Social participation

KW - Stroke

KW - ACTIVITY-CARD-SORT

KW - QUALITY-OF-LIFE

KW - STRUCTURED INTERVIEW

KW - DEPRESSIVE SYMPTOMS

KW - HOSPITAL ANXIETY

KW - UTRECHT SCALE

KW - LONG-TERM

KW - RELIABILITY

KW - VALIDITY

KW - CLASSIFICATION

U2 - 10.1016/j.apmr.2019.05.025

DO - 10.1016/j.apmr.2019.05.025

M3 - Article

SN - 0003-9993

VL - 100

SP - 2096

EP - 2105

JO - Archives of Physical Medicine and Rehabilitation

JF - Archives of Physical Medicine and Rehabilitation

IS - 11

ER -

Comparing Participation Outcome Over Time Across International Stroke Cohorts: Outcomes and Methods

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