Abstract
Objective
To examine and compare the contents of health-related quality of life (HRQoL) measures used in stroke, based on the ICF as the frame of reference.
Design
We conducted a systematic literature review to select current generic and condition-specific HRQoL measures applied in stroke. We examined the contents of the selected measures by linking the concepts within the instruments’ items to the ICF.
Results
The systematic literature review resulted in the selection of six generic and seven stroke-specific HRQoL measures. Within the selected instruments we identified 979 concepts. To map these concepts, we used 200 different ICF categories. None of the ICF categories is contained in all of the instruments. The most frequently used category is ‘b152 Emotional functions’ contained in 53 items from 10 instruments. Stroke-specific measures more often address ‘Mental functions’, while the selected generic instruments more often include Environmental Factors.
Discussion
The present study provides an overview on current HRQoL measures in stroke with respect to their covered contents and provides valuable information to facilitate the selection of appropriate instruments for specific purposes in clinical as well as research settings.
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References
Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., & Rothman, M. (2003). PRO Harmonization Group Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the Patient-Reported Outcomes (PRO) Harmonization Group meeting at the Food and Drug Administration, February 16, 2001. Value Health, 6, 522–531
Anderson, C., Laubscher, S., & Burns, R. (1996). Validation of the Short Form 36 (SF-36) health survey questionnaire among stroke patients. Stroke, 27, 1812–1816
Barak, S., & Duncan, P. W. (2006). Issues in selecting outcome measures to assess functional recovery after stroke. NeuroRx, 3, 505–524
Bergner, M., Bobbitt, R. A., Carter, W. B., & Gilson, B. S. (1981) The Sickness Impact Profile: Development and final revision of a health status measure. Medical Care, 19, 787–805
Bilbao, A., Kennedy, C., Chatterji, S., Ustun, B., Barquero, J. L., & Barth, J. T. (2003). The ICF: Applications of the WHO model of functioning, disability and health to brain injury rehabilitation. NeuroRehabilitation, 18, 239–250
Boldt, C., Brach, M., & Grill, E. et al. (2005). The ICF categories identified in nursing interventions administered to neurological patients with post-acute rehabilitation needs. Disability and Rehabilitation, 27, 431–436
Borchers, M., Cieza, A., Sigl, T., Kollerits, B., Kostanjsek, N., & Stucki, G. (2004). Content comparison of osteoporosis-targeted health status measures in relation to the International Classification of Functioning, Disability and Health (ICF). Clinical Rheumatology, 14, 139–144
Bowling, A. (1995) Measuring disease. A review of disease-specific quality of life measurement scales. Open University Press, Buckingham
Brott, T., Adams, H. P., Olinger, C. P., Marler, J. R., Barsan, W. G., Biller, J., Spilker, J., Holleran, R., Eberle, R., & Hertzberg, V. (1989). Measurements of acute cerebral infarction: A clinical examination scale. Stroke, 20, 864–870
Buck, D., Jacoby, A., Massey, A., & Ford, G. (2000). Evaluation of measures used to assess quality of life after stroke. Stroke, 31, 2004–2010
Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., & Chatterji, S., et al. (2002). Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34, 205–210
Cieza, A., Ewert, T., Üstün, T.B., Chatterji, S., Kostansjek, N., & Stucki, G. (2004). ICF Core Sets development for patients with chronic conditions. Journal of Rehabilitation Medicine, 44 (Suppl), 9–11
Cieza, A., Geyh, S., Chatterji, S., Konstanjsek, N., Üstün, B., & Stucki, G. (2005). ICF linking rules: An update based on lessons learned. Journal of Rehabilitation Medicine, 37, 212–218
Cieza, A., & Stucki, G. (2005). Content comparison of health related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Quality of Life Research, 14, 1225–1237
Clarke, P. J., Black, S. E., Badley, E. M., Lawrence, J. M., & Williams, J. I. (1999). Handicap in stroke survivors. Disability and Rehabilitation, 21, 116–123
Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46
Daneski, K., Coshall, C., Tilling, K., & Wolfe, C. D. (2003). Reliability and validity of a postal version of the Reintegration to Normal Living Index, modified for use with stroke patients. Clinical Rehabilitation, 17, 835–839
De Haan, R., Aaronson, N., Limburg, M., Hewer, R. L., & Van Crevel, H. (1993). Measuring quality of life in stroke. Stroke, 24, 320–327
De Haan, R., Horn, J., Limburg, M., Van Der Meulen, J., & Bossuyt, P. (1993). A comparison of five stroke scales with measures of disability, handicap, and quality of life. Stroke, 24, 1178–1181
Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., & Sandercock, P. (1997). Is the EuroQol a valid measure of health-related quality of life after stroke? Stroke, 28, 1876–1882
Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., & Sandercock, P. (1997). Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke, 28, 1883–1887
Dorman, P., Slattery, J., Farrell, B., Dennis, M., & Sandercock, P. (1998). Qualitative comparison of the reliability of health status assessments with the EuroQol and SF-36 questionnaires after stroke. United Kingdom Collaborators in the International Stroke Trial. Stroke, 29, 63–68
Doyle, P. J. (2002). Measuring health outcomes in stroke survivors. Archives of Physical Medicine and Rehabilitation, 83(Suppl 2), S39-S43
Doyle, P. J., McNeil, M. R., Hula, W. D., & Mikolic, J. M. (2003). The Burden of Stroke Scale (BOSS): Validating patient-reported communication difficulty and associated psychological distress in stroke survivors. Aphasiology, 17, 291–304
Doyle, P. J., McNeil, M. R., Mikolic, J. M., Prieto, L., Hula, W. D., Lustig, A. P., Ross, K., Wambaugh, J. L., Gonzalez-Rothi, L. J., & Elman, R. J. (2004). The Burden of Stroke Scale (BOSS) provides valid and reliable score estimates of functioning and well-being in stroke survivors with and without communication disorders. Journal of Clinical Epidemiology, 57, 997–1007
Duncan, P. W., Bode, R. K., Min Lai, S., & Perera, S. (2003). Glycine Antagonist in Neuroprotection Americans Investigators. Rasch analysis of a new stroke-specific outcome scale: The Stroke Impact Scale. Archives of Physical Medicine and Rehabilitation, 84, 950–63
Duncan, P. W., Jorgensen, H. S., & Wade, D. T. (2000). Outcome measures in acute stroke trials. A systematic review and some recommendations to improve practice. Stroke, 31, 1429–1438
Duncan, P. W., Lai, S. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the Stroke Impact Scale. Stroke, 33, 2593–2599
Duncan, P. W., Reker, D. M., Horner, R. D., Samsa, G. P., Hoenig, H., & LaClair, B. J., et al. (2002). Performance of a mail-administered version of a stroke-specific outcome measure, the Stroke Impact Scale. Clinical Rehabilitation, 16, 493–505
Duncan, P. W., Wallace, D., Lai, S. M., Johnson, D., Embretson, S., & Laster, L. J. (1999) The stroke impact scale version 2.0. Evaluation of reliability, validity, and sensitivity to change. Stroke, 30, 2131–2140
Duncan, P. W., Wallace, D., Studenski, S., Lai, S. M., & Johnson, D. (2001). Conceptualization of a new stroke-specific outcome measure: the Stroke Impact Scale. Topics in Stroke Rehabilitation, 8, 19–33
Ebrahim, S. (1995). Clinical and public health perspectives and applications of health-related quality of life measurement. Social Science & Medicine, 41, 1383–1394
Ebrahim, S., Barer, D., & Nouri, F. (1986). Use of the Nottingham Health Profile with patients after a stroke. Journal of Epidemiology and Community Health, 40, 166–169
Edwards, B., & O’Connell, B. (2003). Internal consistency and validity of the Stroke Impact Scale 2.0 (SIS 2.0) and SIS-16 in an Australian sample. Quality of Life Research, 12, 1127–1135
Efron, B. (1982). The Jackknife, the bootstrap and other resampling plans. Society for Industrial and Applied Mathematics, Philadelphia, PA
Ferrans, C., & Powers, M. (1985). Quality of Life Index: Development and psychometric properties. Advances in Nursing Science, 8, 15–24
Fitzpatrick, R., Davey, C., Buxton, M. J., & Jones, D. R. (1998). Evaluating patient-based outcome measures for use in clinical trials. Health Technology Assessment, 2(i–iv), 1–74
Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). “Mini-Mental State”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198
Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417
Geyh, S., Cieza, A., Schouten, J., Dickson, H., Frommelt, P., Omar, Z., Ring, H., Kostanjsek, N., & Stucki, G. (2004). ICF Core Sets for stroke. Journal of Rehabilitation Medicine, 44(Suppl), 135–41
Geyh, S., Kurt, T., Brockow, T., Cieza, A., Ewert, T., Omar, Z., & Resch, K. L. (2004). Identifying the concepts contained in outcome measures of clinical trials on stroke using the International Classification of Functioning, Disability and Health as a reference. Journal of Rehabilitation Medicine, 44,(Suppl), 56–62
Golomb, B. A., Vickrey, B. G., & Hays, R. D. (2001). A review of health-related quality-of-life measures in stroke. Pharmacoecomomics, 19, 155–85
Gompertz, P., Pound, P., & Ebrahim, S.(1993). The reliability of stroke outcome measures. Clinical Rehabilitation, 7, 290–296
Hagen, S., Bugge, C., & Alexander, H. (2003). Psychometric properties of the SF-36 in the early post-stroke phase. Journal of Advanced Nursing, 44, 461–468
Hamedani, A. G., Wells, C. K., Brass, L. M., Kernan, W. N., Viscoli, C. M., Maraire, J. N., Awad, I. A., & Horwitz, R. I. (2001). A quality-of-life instrument for young hemorrhagic stroke patients. Stroke, 32, 687–695
Harwood, R. H., Gompertz, P., & Ebrahim, S. (1994). Handicap one year after a stroke: validity of a new scale. Journal of Neurology, Neurosurgery, and Psychiatry, 57, 825–829
Harwood, R. H., Rogers, A., Dickinson, E., & Ebrahim, S. (1994). Measuring handicap: The London Handicap Scale, a new outcome measure for chronic disease. Quality in Health Care, 3, 11–16
Higginson, I. J., & Carr, A. J. (2001). Measuring quality of life: Using quality of life measures in the clinical setting. BMJ, 322, 1297–1300
Hilari, K., & Byng, S. (2001). Measuring quality of life in people with aphasia: the Stroke Specific Quality of Life Scale. International Journal of Language & Communication Disorders/Royal College of Speech & Language Therapists, 36 Suppl, 86–91
Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39): Evaluation of acceptability, reliability, and validity. Stroke, 34, 1944–1950
Hobart, J. C., Williams, L. S., Moran, K., & Thompson, A. J. (2002). Quality of life measurement after stroke: uses and abuses of the SF-36. Stroke, 33, 1348–1356
Hunt, S. M., McEwen, J., & McKenna, S. P. (1985). Measuring health status: A new tool for clinicians and epidemiologists. The Journal of the Royal College of General Practitioners, 35, 185–188
Jenkinson, C., Mant, J., Carter, J., Wade, D., & Winner, S. (2000). The London handicap scale: a re-evaluation of its validity using standard scoring and simple summation. Journal of Neurology, Neurosurgery, and Psychiatry, 68, 365–367
Jette, A. M. (1993). Using health-related quality of life measures in physical therapy outcomes research. Physical Therapy, 73, 528–537
Kasner, S. E. (2006). Clinical interpretation and use of stroke scales. Lancet Neurology, 5, 603–612
King, R. B. (1996). Quality of Life after Stroke. Stroke, 27, 1467–1472
Mahoney, F. I., Wood, O. H., & Barthel, D. W. (1958). Rehabilitation of chronically ill patients: the influence of complications on the final goal. The Southern Medical Journal, 51, 605–609
McHorney, C. A. (1999). Health status assessment methods for adults: Past accomplishments and future challenges. Annual Review of Public Health, 20, 309–335
Naughton, M. J., & Shumaker, S. A. (2003). The case for domains of function in quality of life assessment. Quality of Life Research, 12 Suppl 1, 73–80
Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and health utilities index. Stroke, 35, 607–612
Post, M. W., de Witte, L. P., & Schrijvers, A. J. (1999). Quality of life and the ICIDH: towards an integrated conceptual model for rehabilitation outcomes research. Clinical Rehabilitation, 13, 5–15
Pound, P., Gompertz, P., & Ebrahim, S. (1998). A patient-centered study of the consequences of stroke. Clinical Rehabilitation, 12, 338–347
Rankin, J. (1957). Cerebral vascular accidents in patients over the age of 60. 2. Prognosis. Scottish Medical Journal, 2, 200–215
Rentsch, H. P., Bucher, P., Dommen Nyffeler, I., Wolf, C., Hefti, H., Fluri, E., Wenger, U., Walti, C., & Boyer, I. (2003). The Implementation of the International Classification of Functioning, Disability and Health (ICF) in Daily Practice of Neurorehabilitation: An Interdisciplinary Project at the Kantonsspital of Lucerne, Switzerland. Disability and Rehabilitation, 25, 411–421
Revicki, D. A., & Cella, D. F. (1997). Health status assessment for the twenty-first century: item response theory, item banking and computer adaptive testing. Quality of Life Research, 6, 595–600
Roberts, L., & Counsell, C. (1998). Assessment of clinical outcomes in acute stroke trials. Stroke, 29, 986–991
Robinson-Smith, G., Johnston, M. V., & Allen, J. (2000). Self-care self-efficacy, quality of life, and depression after stroke. Archives of Physical Medicine and Rehabilitation, 81, 460–464
Salter, K., Jutai, J. W., Teasell, R., Foley, N. C., & Bitensky, J. (2005). Issues for selection of outcome measures in stroke rehabilitation: ICF body functions. Disability and Rehabilitation, 27, 191–207
Salter, K., Jutai, J. W., Teasell, R., Foley, N. C., Bitensky, J., & Bayley, M. (2005). Issues for selection of outcome measures in stroke rehabilitation: ICF activity. Disability and Rehabilitation, 27, 315–340
Salter, K., Jutai, J. W., Teasell, R., Foley, N. C., Bitensky, J., & Bayley, M. (2005). Issues for selection of outcome measures in stroke rehabilitation: ICF participation. Disability and Rehabilitation, 27, 507–528
Sanders, C., Egger, M., Donovan, J., Tallon, D., & Frankel, S. (1998). Reporting on quality of life in randomised controlled trials: Bibliographic study. BMJ, 317, 1191–1194
SAS Institute Inc. (2001). The SAS System for Windows, Version 8.2. SAS Institute Inc, Cary, NC
Scientific Advisory Committee of the Medical Outcomes Trust. (2002). Assessing health status and quality-of-life instruments: Attributes and review criteria. Quality of Life Research, 11, 193–205
Sigl, T., Cieza, A., Brockow, T., Chatterji, S., Kostanjsek, N., & Stucki, G. (2006). Content comparison of low back pain-specific measures based on the International Classification of Functioning, Disability and Health (ICF). The Clinical Journal of Pain, 22, 147–153
Sneeuw, K. C., Aaronson, N. K., de Haan, R. J., & Limburg, M. (1997). Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke, 28, 1541–1549
Stamm, T. A., Cieza, A., Machold, K. P., Smolen, J. S., & Stucki, G. (2004). Content comparison of occupation-based instruments in adult rheumatology and musculoskeletal rehabilitation based on the International Classification of Functioning, Disability and Health. Arthritis and Rheumatism, 51, 917–924
Stamm, T. A., Cieza, A., Machold, K., Smolen, J. S., & Stucki, G. (In press). An exploration of the link of conceptual occupational therapy models to the International Classification of Functioning, Disability and Health (ICF). Arthritis and Rheumatism.
Stucki, G., Cieza, A., Ewert, T., Kostanjsek, N., Chatterji, S., & Üstün, B. (2002). Application of the international classification of functioning, disability and health (ICF) in clinical practice. Disability and Rehabilitation, 24, 281–282
The EuroQol Group. (1990). EuroQol – a new facility for the measurement of health-related quality of life. Health Policy, 16, 199–208
Tooth, L. R., McKenna, K. T., Smith, M., & O’Rourke, P. K. (2003). Reliability of scores between stroke patients and significant others on the Reintegration to Normal Living (RNL) Index. Disability and Rehabilitation, 25, 433–440
Ueda, S., & Okawa, Y. (2003). The subjective dimension of functioning and disability: What is it and what is it for? Disability and Rehabilitation, 25, 596–601
Van de Port, I. G., Ketelaar, M., Schepers, V. P., Van den Bos, G. A., & Lindeman, E. (2004). Monitoring the functional health status of stroke patients: the value of the Stroke-Adapted Sickness Impact Profile-30. Disability and Rehabilitation, 26, 635–640
Van Straten, A., de Haan, R. J., Limburg, M., Schuling, J., Bossuyt, P. M., & van den Bos, G. A. (1997). A stroke-adapted 30-item version of the Sickness Impact Profile to assess quality of life (SA-SIP30). Stroke, 28, 2155–2161
Vierkant, R. A. (2000). A SAS macro for calculating bootstrapped confidence intervals about a Kappa coefficient. SAS Users Group International Online Proceedings. Retrieved July 23, 2004, from < http://www2.sas.com/proceedings/sugi22/STATS/PAPER295.PDF >
Visser, M. C., Koudstaal, P. J., Erdman, R. A., Deckers, J. W., Passchier, J., van Gijn, J., & Grobbee, D. E. (1995). Measuring quality of life in patients with myocardial infarction or stroke: A feasibility study of four questionnaires in The Netherlands. Journal of Epidemiology and Community Health, 49, 513–517
Wade, D. T. (1992). Measurement in neurological rehabilitation. Oxford University Press, New York
Wade, D. T., & de Jong, B. A. (2000). Recent advances in rehabilitation. BMJ, 320, 1385–1388
Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473–83
Weigl, M., Cieza, A., Harder, M., Geyh, S., Amann, E., Kostanjsek, N., & Stucki, G. (2003). Linking osteoarthritis-specific health-status measures to the International Classification of Functioning, Disability, and Health (ICF). Osteoarthritis Cartilage, 11, 519–523
Williams, L. S. (1998). Health-related quality of life outcomes in stroke. Neuroepidemiology, 17, 116–20
Williams, L. S., Weinberger, M., Harris, L. E., Clark, D. O., & Biller, J. (1999). Development of a stroke-specific quality of life scale. Stroke, 30, 1362–1369
Wood-Dauphinee, S. (1998). Competing conceptual frameworks for assessing rehabilitation outcomes. Canadian Journal of Rehabilitation, 11, 165–167
Wood-Dauphinee, S. L., Opzoomer, M. A., Williams, J. I., Marchand, B., & Spitzer, W. O. (1988). Assessment of global function: The Reintegration to Normal Living Index. Archives of Physical Medicine and Rehabilitation, 69, 583–590
World Health Organization. (2001). International classification of functioning, disability and health: ICF. World Health Organization, Geneva
Acknowledgements
We thank Ms Edda Amann, MPH, ICF Research Branch of the WHO FIC Collaborating Center (DIMDI), IHRS, Ludwig-Maximilians-University, Munich, Germany for her contribution to the linkage procedure.
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Geyh, S., Cieza, A., Kollerits, B. et al. Content comparison of health-related quality of life measures used in stroke based on the international classification of functioning, disability and health (ICF): a systematic review. Qual Life Res 16, 833–851 (2007). https://doi.org/10.1007/s11136-007-9174-8
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DOI: https://doi.org/10.1007/s11136-007-9174-8