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

  • Daan Verberne
    Affiliations
    Maastricht University Medical Center, Department of Psychiatry and Neuropsychology, Faculty of Health, Medicine and Neuroscience, School for Mental Health and Neuroscience, Maastricht, The Netherlands

    Limburg Brain Injury Centre, Maastricht, The Netherlands
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  • Tamara Tse
    Affiliations
    Occupational Therapy, School of Allied Health, College of Science, Health, and Engineering, La Trobe University, Melbourne, Australia

    Neurorehabilitation and Recovery, Stroke Division Florey Institute of Neuroscience and Mental Health, Heidelberg, Australia

    St. Vincent’s Hospital, Melbourne, Fitzroy, Australia
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  • Thomas Matyas
    Affiliations
    Occupational Therapy, School of Allied Health, College of Science, Health, and Engineering, La Trobe University, Melbourne, Australia

    Neurorehabilitation and Recovery, Stroke Division Florey Institute of Neuroscience and Mental Health, Heidelberg, Australia
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  • Carolyn Baum
    Affiliations
    Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, MO
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  • Marcel Post
    Affiliations
    Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation, Utrecht, The Netherlands

    University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, the Netherlands
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  • Author Footnotes
    ∗ Carey and Heugten contributed equally as senior authors to this work.
    Leeanne Carey
    Footnotes
    ∗ Carey and Heugten contributed equally as senior authors to this work.
    Affiliations
    Occupational Therapy, School of Allied Health, College of Science, Health, and Engineering, La Trobe University, Melbourne, Australia

    Neurorehabilitation and Recovery, Stroke Division Florey Institute of Neuroscience and Mental Health, Heidelberg, Australia
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  • Author Footnotes
    ∗ Carey and Heugten contributed equally as senior authors to this work.
    Caroline van Heugten
    Correspondence
    Corresponding author Caroline van Heugten, PhD, Maastricht University, School for Mental Health and Neuroscience, P.O. 616 UNS 40, 6200 MD, Maastricht, the Netherlands.
    Footnotes
    ∗ Carey and Heugten contributed equally as senior authors to this work.
    Affiliations
    Maastricht University Medical Center, Department of Psychiatry and Neuropsychology, Faculty of Health, Medicine and Neuroscience, School for Mental Health and Neuroscience, Maastricht, The Netherlands

    Limburg Brain Injury Centre, Maastricht, The Netherlands

    Maastricht University, Department of Neuropsychology and Psychopharmacology, Faculty of Psychology and Neuroscience, Maastricht, the Netherlands
    Search for articles by this author
  • Author Footnotes
    ∗ Carey and Heugten contributed equally as senior authors to this work.

      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)
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      References

        • van de Port I.G.
        • Kwakkel G.
        • van Wijk I.
        • Lindeman E.
        Susceptibility to deterioration of mobility long-term after stroke: a prospective cohort study.
        Stroke. 2006; 37: 167-171
        • Lesniak M.
        • Bak T.
        • Czepiel W.
        • Seniow J.
        • Czlonkowska A.
        Frequency and prognostic value of cognitive disorders in stroke patients.
        Dement Geriatr Cogn Disord. 2008; 26: 356-363
        • Bergersen H.
        • Froslie K.F.
        • Stibrant Sunnerhagen K.
        • Schanke A.K.
        Anxiety, depression, and psychological well-being 2 to 5 years poststroke.
        J Stroke Cerebrovasc Dis. 2010; 19: 364-369
        • Schepers V.
        • Post M.
        • Visser-Meily A.
        • van de Port I.
        • Akhmouch M.
        • Lindeman E.
        Prediction of depressive symptoms up to three years post-stroke.
        J Rehabil Med. 2009; 41: 930-935
        • Snaphaan L.
        • van der Werf S.
        • de Leeuw F.E.
        Time course and risk factors of post-stroke fatigue: a prospective cohort study.
        Eur J Neurol. 2011; 18: 611-617
        • World Health Organization
        Towards a common language for functioning, disability and health: ICF.
        World Health Organization, Geneva, Switzerland2002
        • Rochette A.
        • Bravo G.
        • Desrosiers J.
        • St-Cyr Tribble D.
        • Bourget A.
        Adaptation process, participation and depression over six months in first-stroke individuals and spouses.
        Clin Rehabil. 2007; 21: 554-562
        • Singam A.
        • Ytterberg C.
        • Tham K.
        • von Koch L.
        Participation in complex and social everyday activities six years after stroke: predictors for return to pre-stroke level.
        PLoS One. 2015; 10e0144344
        • Desrosiers J.
        • Rochette A.
        • Noreau L.
        • Bourbonnais D.
        • Bravo G.
        • Bourget A.
        Long-term changes in participation after stroke.
        Top Stroke Rehabil. 2006; 13: 86-96
        • Hartman-Maeir A.
        • Soroker N.
        • Ring H.
        • Avni N.
        • Katz N.
        Activities, participation and satisfaction one-year post stroke.
        Disabil Rehabil. 2007; 29: 559-566
        • Verberne D.P.
        • Post M.W.
        • Köhler S.
        • Carey L.M.
        • Visser-Meily J.M.
        • van Heugten C.M.
        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
        • Dijkers M.P.
        Issues in the conceptualization and measurement of participation: an overview.
        Arch Phys Med Rehabil. 2010; 91: S5-S16
        • Cardol M.
        • De Jong B.A.
        • Ward C.D.
        On autonomy and participation in rehabilitation.
        Disabil Rehabil. 2002; 24 (discussion 975-1004): 970-974
        • Desrosiers J.
        Muriel Driver Memorial Lecture. Participation and occupation.
        Can J Occup Ther. 2005; 72: 195-204
        • Burton C.R.
        Living with stroke: a phenomenological study.
        J Adv Nurs. 2000; 32: 301-309
        • Woodman P.
        • Riazi A.
        • Pereira C.
        • Jones F.
        Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors.
        Disabil Rehabil. 2014; 36: 2031-2043
        • Tse T.
        • Douglas J.
        • Lentin P.
        • Carey L.
        Measuring participation after stroke: a review of frequently used tools.
        Arch Phys Med Rehabil. 2013; 94: 177-192
        • Baum C.M.
        • Edwards D.
        ACS: Activity Card Sort.
        Washington University School of Medicine, St. Louis2001
        • Packer T.L.
        • Boshoff K.
        • DeJonge D.
        Development of the activity card sort--Australia.
        Aust Occup Ther J. 2008; 55: 199-206
        • Chan V.W.
        • Chung J.C.
        • Packer T.L.
        Validity and reliability of the Activity Card Sort—Hong Kong version.
        OTJR (Thorofare N J). 2006; 26: 152-158
        • Katz N.
        • Karpin H.
        • Lak A.
        • Furman T.
        • Hartman-Maeir A.
        Participation in occupational performance: reliability and validity of the Activity Card Sort.
        OTJR (Thorofare N J). 2003; 23: 10-17
        • Duncan P.W.
        • Bode R.K.
        • Min Lai S.
        • Perera S.
        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
        • Fougeyrollas P.
        • Noreau L.
        • St-Michel G.
        Life Habits measure–shortened version (LIFE-H 3.0). Lac St-Charles.
        CQCIDIH, Quebec, Canada2001
        • Post M.W.
        • van der Zee C.H.
        • Hennink J.
        • Schafrat C.G.
        • Visser-Meily J.M.
        • van Berlekom S.B.
        Validity of the utrecht scale for evaluation of rehabilitation-participation.
        Disabil Rehabil. 2012; 34: 478-485
        • Bruyère S.M.
        • Van Looy S.A.
        • Peterson D.B.
        The international classification of functioning, disability and health: contemporary literature overview.
        Rehabil Psychol. 2005; 50: 113-121
        • Carey L.M.
        • Crewther S.
        • Salvado O.
        • et al.
        STroke imAging pRevention and treatment (START): a longitudinal stroke cohort study: clinical trials protocol.
        Int J Stroke. 2015; 10: 636-644
        • Tse T.
        • Binte Yusoff S.Z.
        • Churilov L.
        • et al.
        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
        • van Mierlo M.L.
        • van Heugten C.M.
        • Post M.W.
        • Lindeman E.
        • de Kort P.L.
        • Visser-Meily J.M.
        A longitudinal cohort study on quality of life in stroke patients and their partners: Restore4Stroke Cohort.
        Int J Stroke. 2014; 9: 148-154
        • Collin C.
        • Wade D.T.
        • Davies S.
        • Horne V.
        The Barthel ADL Index: a reliability study.
        Int Disabil Stud. 1988; 10: 61-63
        • Meijer R.
        • van Limbeek J.
        • de Haan R.
        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
        • Doney R.M.
        • Packer T.L.
        Measuring changes in activity participation of older Australians: validation of the Activity Card Sort-Australia.
        Australas J Ageing. 2008; 27: 33-37
        • Baum C.M.
        • Edwards D.
        ACS: Activity Card Sort.
        American Occupational Therapy Association, Bethesda, MD2008
        • van der Zee C.H.
        • Priesterbach A.R.
        • van der Dussen L.
        • et al.
        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
        • Brott T.
        • Adams Jr., H.P.
        • Olinger C.P.
        • et al.
        Measurements of acute cerebral infarction: a clinical examination scale.
        Stroke. 1989; 20: 864-870
        • Wilson J.T.
        • Hareendran A.
        • Grant M.
        • et al.
        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
        • Nasreddine Z.S.
        • Phillips N.A.
        • Bedirian V.
        • et al.
        The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment.
        J Am Geriatr Soc. 2005; 53: 695-699
        • Williams J.B.
        • Kobak K.A.
        Development and reliability of a structured interview guide for the Montgomery Asberg Depression Rating Scale (SIGMA).
        Br J Psychiatry. 2008; 192: 52-58
        • Spinhoven P.
        • Ormel J.
        • Sloekers P.P.
        • Kempen G.I.
        • Speckens A.E.
        • Van Hemert A.M.
        A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects.
        Psychol Med. 1997; 27: 363-370
        • Sagen U.
        • Vik T.G.
        • Moum T.
        • Morland T.
        • Finset A.
        • Dammen T.
        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
        • Zigmond A.S.
        • Snaith R.P.
        The hospital anxiety and depression scale.
        Acta Psychiatr Scand. 1983; 67: 361-370
        • Snaith R.P.
        • Harrop F.M.
        • Newby D.A.
        • Teale C.
        Grade scores of the Montgomery-Asberg Depression and the Clinical Anxiety Scales.
        Br J Psychiatry. 1986; 148: 599-601
        • Tse T.
        • Douglas J.
        • Lentin P.
        • et al.
        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
        • Ezekiel L.
        • Collett J.
        • Mayo N.E.
        • Pang L.
        • Field L.
        • Dawes H.
        Factors associated with participation in life situations for adults with stroke: a systematic review.
        Arch Phys Med Rehabil. 2019; 100: 945-955
        • Cieza A.
        • Brockow T.
        • Ewert T.
        • et al.
        Linking health-status measurements to the international classification of functioning, disability and health.
        J Rehabil Med. 2002; 34: 205-210
        • Cieza A.
        • Geyh S.
        • Chatterji S.
        • Kostanjsek N.
        • Ustun B.
        • Stucki G.
        ICF linking rules: an update based on lessons learned.
        J Rehabil Med. 2005; 37: 212-218
        • Cieza A.
        • Fayed N.
        • Bickenbach J.
        • Prodinger B.
        Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information.
        Dis Rehabil. 2019; 41: 574-583
        • Ballert C.S.
        • Hopfe M.
        • Kus S.
        • Mader L.
        • Prodinger B.
        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