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).
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.
Keywords
List of abbreviations:
ACS (Activity Card Sort), ADL (activities of daily living), BI (Barthel Index), ICF (International Classification of Functioning, Disability and Health), IQR (interquartile range), mRS (modified Ranking Scale), USER-P (Utrecht Scale of Evaluation of Rehabilitation-Participation), START-PrePARE (STroke imAging pRevention and Treatment-Prediction and Prevention to Achieve optimal Recovery Endpoints after stroke)To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Archives of Physical Medicine and RehabilitationAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Susceptibility to deterioration of mobility long-term after stroke: a prospective cohort study.Stroke. 2006; 37: 167-171
- Frequency and prognostic value of cognitive disorders in stroke patients.Dement Geriatr Cogn Disord. 2008; 26: 356-363
- Anxiety, depression, and psychological well-being 2 to 5 years poststroke.J Stroke Cerebrovasc Dis. 2010; 19: 364-369
- Prediction of depressive symptoms up to three years post-stroke.J Rehabil Med. 2009; 41: 930-935
- Time course and risk factors of post-stroke fatigue: a prospective cohort study.Eur J Neurol. 2011; 18: 611-617
- Towards a common language for functioning, disability and health: ICF.World Health Organization, Geneva, Switzerland2002
- Adaptation process, participation and depression over six months in first-stroke individuals and spouses.Clin Rehabil. 2007; 21: 554-562
- Participation in complex and social everyday activities six years after stroke: predictors for return to pre-stroke level.PLoS One. 2015; 10e0144344
- Long-term changes in participation after stroke.Top Stroke Rehabil. 2006; 13: 86-96
- Activities, participation and satisfaction one-year post stroke.Disabil Rehabil. 2007; 29: 559-566
- Course of social participation in the first 2 years after stroke and its associations with demographic and stroke-related factors.Neurorehabil Neural Repair. 2018; 32: 821-833
- Issues in the conceptualization and measurement of participation: an overview.Arch Phys Med Rehabil. 2010; 91: S5-S16
- On autonomy and participation in rehabilitation.Disabil Rehabil. 2002; 24 (discussion 975-1004): 970-974
- Muriel Driver Memorial Lecture. Participation and occupation.Can J Occup Ther. 2005; 72: 195-204
- Living with stroke: a phenomenological study.J Adv Nurs. 2000; 32: 301-309
- Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors.Disabil Rehabil. 2014; 36: 2031-2043
- Measuring participation after stroke: a review of frequently used tools.Arch Phys Med Rehabil. 2013; 94: 177-192
- ACS: Activity Card Sort.Washington University School of Medicine, St. Louis2001
- Development of the activity card sort--Australia.Aust Occup Ther J. 2008; 55: 199-206
- Validity and reliability of the Activity Card Sort—Hong Kong version.OTJR (Thorofare N J). 2006; 26: 152-158
- Participation in occupational performance: reliability and validity of the Activity Card Sort.OTJR (Thorofare N J). 2003; 23: 10-17
- Glycine Antagonist in Neuroprotection Americans Investigators. Rasch analysis of a new stroke-specific outcome scale: the Stroke Impact Scale.Arch Phys Med Rehabil. 2003; 84: 950-963
- Life Habits measure–shortened version (LIFE-H 3.0). Lac St-Charles.CQCIDIH, Quebec, Canada2001
- Validity of the utrecht scale for evaluation of rehabilitation-participation.Disabil Rehabil. 2012; 34: 478-485
- The international classification of functioning, disability and health: contemporary literature overview.Rehabil Psychol. 2005; 50: 113-121
- STroke imAging pRevention and treatment (START): a longitudinal stroke cohort study: clinical trials protocol.Int J Stroke. 2015; 10: 636-644
- Increased work and social engagement is associated with increased stroke specific quality of life in stroke survivors at 3 months and 12 months post-stroke: a longitudinal study of an Australian stroke cohort.Top Stroke Rehabil. 2017; 24: 405-414
- A longitudinal cohort study on quality of life in stroke patients and their partners: Restore4Stroke Cohort.Int J Stroke. 2014; 9: 148-154
- The Barthel ADL Index: a reliability study.Int Disabil Stud. 1988; 10: 61-63
- Development of the Stroke-unit Discharge Guideline: choice of assessment instruments for prediction in the subacute phase post-stroke.Int J Rehabil Res. 2006; 29: 1-8
- Measuring changes in activity participation of older Australians: validation of the Activity Card Sort-Australia.Australas J Ageing. 2008; 27: 33-37
- ACS: Activity Card Sort.American Occupational Therapy Association, Bethesda, MD2008
- Reproducibility of three self-report participation measures: the ICF Measure of Participation and Activities Screener, the Participation Scale, and the Utrecht Scale for Evaluation of Rehabilitation-Participation.J Rehabil Med. 2010; 42: 752-757
- Measurements of acute cerebral infarction: a clinical examination scale.Stroke. 1989; 20: 864-870
- Improving the assessment of outcomes in stroke: use of a structured interview to assign grades on the modified Rankin Scale.Stroke. 2002; 33: 2243-2246
- The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment.J Am Geriatr Soc. 2005; 53: 695-699
- Development and reliability of a structured interview guide for the Montgomery Asberg Depression Rating Scale (SIGMA).Br J Psychiatry. 2008; 192: 52-58
- A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects.Psychol Med. 1997; 27: 363-370
- Screening for anxiety and depression after stroke: comparison of the hospital anxiety and depression scale and the Montgomery and Asberg depression rating scale.J Psychosom Res. 2009; 67: 325-332
- The hospital anxiety and depression scale.Acta Psychiatr Scand. 1983; 67: 361-370
- Grade scores of the Montgomery-Asberg Depression and the Clinical Anxiety Scales.Br J Psychiatry. 1986; 148: 599-601
- Reduction in retained activity participation is associated with depressive symptoms 3 months after mild stroke: an observational cohort study.J Rehabil Med. 2017; 49: 120-127
- Factors associated with participation in life situations for adults with stroke: a systematic review.Arch Phys Med Rehabil. 2019; 100: 945-955
- Linking health-status measurements to the international classification of functioning, disability and health.J Rehabil Med. 2002; 34: 205-210
- ICF linking rules: an update based on lessons learned.J Rehabil Med. 2005; 37: 212-218
- Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information.Dis Rehabil. 2019; 41: 574-583
- Using the refined ICF linking rules to compare the content of existing instruments and assessments: a systematic review and exemplary analysis of instruments measuring participation.Dis Rehabil. 2019; 41: 584-600
Article info
Publication history
Published online: May 31, 2019
Footnotes
Disclosures: none.
Clinical Trial Registration No.: ACTRN12610000987066.
Supported by the James S. McDonnell Foundation 21st Century Science Initiative in Cognitive Rehabilitation (award no. 220020413). STroke imAging pRevention and Treatment is supported by the Commonwealth Scientific and Industrial Research Organization of Australia, Flagship Collaboration Fund through the Preventative Health Flagship and National Health and Medical Research Council (grant no. GNT1113352). Restore4stroke is supported by the Dutch VSBFonds (grant no. 89000004) and the Dutch Heart Foundation.
Identification
Copyright
© 2019 by the American Congress of Rehabilitation Medicine
