Skip to main content

Advertisement

SpringerLink
Log in

Self-reported quality of life following stroke: a systematic review of instruments with a focus on their psychometric properties

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

To evaluate the psychometric properties of common health-related quality-of-life instruments used post stroke and provide recommendations for research and clinical use with this diagnostic group.

Methods

A systematic review of the psychometric properties of the five most commonly used quality-of-life measurement tools (EQ-5D, SF-36, SF-6D, AQoL, SS-QOL) was conducted. Electronic searches were performed in MEDLINE, CINAHL, and EMBASE on November 27th 2019. Two authors screened papers against the inclusion criteria and where consensus was not reached, a third author was consulted. Included papers were appraised using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist and findings synthesized to make recommendations.

Results

A total of n = 50,908 papers were screened and n = 45 papers reporting on 40 separate evaluations of psychometric properties met inclusion criteria (EQ-5D = 19, SF-36 = 16, SF-6D = 4, AQoL = 2, SS-QOL = 4). Studies reported varied psychometric quality of instruments, and results show that psychometric properties of quality-of-life instruments for the stroke population have not been well established. The strongest evidence was identified for the use of the EQ-5D as a quality-of-life assessment for adult stroke survivors.

Conclusions

This systematic evaluation of the psychometric properties of self-reported quality-of-life instruments used with adults after stroke suggests that validity across tools should not be assumed. Clinicians and researchers alike may use findings to help identify the most valid and reliable measurement instrument for understanding the impact of stroke on patient-reported quality of life.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Mukherjee, D., & Patil, C. G. (2011). Epidemiology and the global burden of stroke. World Neurosurgery, 76(6 Suppl), S85-90. https://doi.org/10.1016/j.wneu.2011.07.023

    Article  PubMed  Google Scholar 

  2. Doyle, P. J., McNeil, M. R., Bost, J. E., Ross, K. B., Wambaugh, J. L., Hula, W. D., et al. (2007). The Burden of Stroke Scale (BOSS) provided valid, reliable, and responsive score estimates of functioning and well-being during the first year of recovery from stroke. Quality of Life Research, 16(8), 1389–1398. https://doi.org/10.1007/s11136-007-9247-8

    Article  PubMed  Google Scholar 

  3. Pedersen, S. G., Heiberg, G. A., Nielsen, J. F., Friborg, O., Stabel, H. H., Anke, A., et al. (2018). Validity, reliability and Norwegian adaptation of the Stroke-Specific Quality of Life (SS-QOL) scale. SAGE Open Medicine, 6, 2050312117752031. https://doi.org/10.1177/2050312117752031

    Article  PubMed  PubMed Central  Google Scholar 

  4. Heiberg, G., Pedersen, S. G., Friborg, O., Nielsen, J. F., Holm, H. S., von Steinbuchel, N., et al. (2018). Can the health related quality of life measure QOLIBRI-overall scale (OS) be of use after stroke? A validation study. BMC Neurology, 18(1), 98. https://doi.org/10.1186/s12883-018-1101-9

    Article  PubMed  PubMed Central  Google Scholar 

  5. Lennon, O. C., Carey, A., Creed, A., Durcan, S., & Blake, C. (2011). Reliability and validity of COOP/WONCA functional health status charts for stroke patients in primary care. Journal of Stroke and Cerebrovascular Diseases, 20(5), 465–473. https://doi.org/10.1016/j.jstrokecerebrovasdis.2010.02.020

    Article  PubMed  Google Scholar 

  6. Centers for Disease Control and Prevention. (2016). Health related quality of life (HRQOL). Retrieved Aug 19, 2018, from https://www.cdc.gov/hrqol/concept.htm

  7. Salter, K. L., Moses, M. B., Foley, N. C., & Teasell, R. W. (2008). Health-related quality of life after stroke: What are we measuring? International Journal of Rehabilitation Research, 31(2), 111–117. https://doi.org/10.1097/MRR.0b013e3282fc0f33

    Article  PubMed  Google Scholar 

  8. 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(7), 1362–1369.

    Article  CAS  Google Scholar 

  9. Carod-Artal, F. J. (2012). Determining quality of life in stroke survivors. Expert Review of Pharmacoeconomics & Outcomes Research, 12(2), 199–211. https://doi.org/10.1586/erp.11.104

    Article  Google Scholar 

  10. Geyh, S., Cieza, A., Kollerits, B., Grimby, G., & Stucki, G. (2007). 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. Quality of Life Research, 16(5), 833–851. https://doi.org/10.1007/s11136-007-9174-8

    Article  CAS  PubMed  Google Scholar 

  11. Duncan, P. W., Bode, R. K., Min Lai, S., Perera, S., & Glycine Antagonist in Neuroprotection Americans, I. (2003). Rasch analysis of a new stroke-specific outcome scale: The Stroke Impact Scale. Archives of Physical Medicine and Rehabilitation, 84(7), 950–963.

    Article  Google Scholar 

  12. de Haan, R., Aaronson, N., Limburg, M., Hewer, R. L., & van Crevel, H. (1993). Measuring quality of life in stroke. Stroke, 24(2), 320–327.

    Article  Google Scholar 

  13. Buck, D., Jacoby, A., Massey, A., & Ford, G. (2000). Evaluation of measures used to assess quality of life after stroke. Stroke, 31(8), 2004–2010.

    Article  CAS  Google Scholar 

  14. Golomb, B. A., Vickrey, B. G., & Hays, R. D. (2001). A review of health-related quality-of-life measures in stroke. PharmacoEconomics, 19(2), 155–185.

    Article  CAS  Google Scholar 

  15. Terwee, C. B., Mokkink, L. B., Knol, D. L., Ostelo, R. W., Bouter, L. M., & de Vet, H. C. (2012). Rating the methodological quality in systematic reviews of studies on measurement properties: A scoring system for the COSMIN checklist. Quality of Life Research, 21(4), 651–657. https://doi.org/10.1007/s11136-011-9960-1

    Article  PubMed  Google Scholar 

  16. EuroQol, G. (1990). EuroQol—A new facility for the measurement of health-related quality of life. Health Policy, 16(3), 199–208.

    Article  Google Scholar 

  17. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.

    Article  Google Scholar 

  18. Brazier, J., Roberts, J., & Deverill, M. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21(2), 271–292.

    Article  Google Scholar 

  19. Hawthorne, G., Richardson, J., & Osborne, R. (1999). The Assessment of Quality of Life (AQoL) instrument: A psychometric measure of health-related quality of life. Quality of Life Research, 8(3), 209–224.

    Article  CAS  Google Scholar 

  20. Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012

    Article  PubMed  Google Scholar 

  21. Dobson, F., Hinman, R. S., Hall, M., Terwee, C. B., Roos, E. M., & Bennell, K. L. (2012). Measurement properties of performance-based measures to assess physical function in hip and knee osteoarthritis: A systematic review. Osteoarthritis Cartilage, 20(12), 1548–1562. https://doi.org/10.1016/j.joca.2012.08.015

    Article  CAS  PubMed  Google Scholar 

  22. Wales, K., Clemson, L., Lannin, N., & Cameron, I. (2016). Functional assessments used by occupational therapists with older adults at risk of activity and participation limitations: A systematic review. PLoS ONE, 11(2), e0147980. https://doi.org/10.1371/journal.pone.0147980

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  23. Abel, H., Kephart, G., Packer, T., & Warner, G. (2017). Discordance in utility measurement in persons with neurological conditions: A comparison of the SF-6D and the HUI3. Value in Health, 20(8), 1157–1165. https://doi.org/10.1016/j.jval.2017.04.008

    Article  PubMed  Google Scholar 

  24. Anderson, C., Laubscher, S., & Burns, R. (1996). Validation of the Short Form 36 (SF-36) health survey questionnaire among stroke patients. Stroke, 27(10), 1812–1816.

    Article  CAS  Google Scholar 

  25. Appau, A., Lencucha, R., Finch, L., & Mayo, N. (2019). Further validation of the Preference-Based Stroke Index three months after stroke. Clinical Rehabilitation, 33(7), 1214–1220. https://doi.org/10.1177/0269215519834064

    Article  PubMed  Google Scholar 

  26. Barton, G. R., Sach, T. H., Doherty, M., Avery, A. J., Jenkinson, C., & Muir, K. R. (2008). An assessment of the discriminative ability of the EQ-5Dindex, SF-6D, and EQ VAS, using sociodemographic factors and clinical conditions. The European Journal of Health Economics, 9(3), 237–249. https://doi.org/10.1007/s10198-007-0068-z

    Article  PubMed  Google Scholar 

  27. Barton, G. R., Sach, T. H., Avery, A. J., Jenkinson, C., Doherty, M., Whynes, D. K., et al. (2008). A comparison of the performance of the EQ-5D and SF-6D for individuals aged > or = 45 years. Health Economics, 17(7), 815–832. https://doi.org/10.1002/hec.1298

    Article  PubMed  Google Scholar 

  28. Chen, Q., Cao, C., Gong, L., & Zhang, Y. (2019). Health related quality of life in stroke patients and risk factors associated with patients for return to work. Medicine (Baltimore), 98(16), e15130. https://doi.org/10.1097/md.0000000000015130

    Article  Google Scholar 

  29. Czechowsky, D., & Hill, M. D. (2002). Neurological outcome and quality of life after stroke due to vertebral artery dissection. Cerebrovascular Diseases, 13(3), 192–197. https://doi.org/10.1159/000047775

    Article  PubMed  Google Scholar 

  30. Deane, M., Pigott, T., & Dearing, P. (1996). The value of the Short Form 36 score in the outcome assessment of subarachnoid haemorrhage. British Journal of Neurosurgery, 10(2), 187–191.

    Article  CAS  Google Scholar 

  31. 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(10), 1876–1882.

    Article  CAS  Google Scholar 

  32. 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(1), 63–68.

    Article  CAS  Google Scholar 

  33. Dorman, P. J., Dennis, M., & Sandercock, P. (1999). How do scores on the EuroQol relate to scores on the SF-36 after stroke? Stroke, 30(10), 2146–2151.

    Article  CAS  Google Scholar 

  34. Duncan, P. W., Samsa, G. P., Weinberger, M., Goldstein, L. B., Bonito, A., Witter, D. M., et al. (1997). Health status of individuals with mild stroke. Stroke, 28(4), 740–745.

    Article  CAS  Google Scholar 

  35. Gillard, P. J., Sucharew, H., Kleindorfer, D., Belagaje, S., Varon, S., Alwell, K., et al. (2015). The negative impact of spasticity on the health-related quality of life of stroke survivors: A longitudinal cohort study. Health and Quality of Life Outcomes, 13, 159. https://doi.org/10.1186/s12955-015-0340-3

    Article  PubMed  PubMed Central  Google Scholar 

  36. Hagen, S., Bugge, C., & Alexander, H. (2003). Psychometric properties of the SF-36 in the early post-stroke phase. Journal of Advanced Nursing, 44(5), 461–468.

    Article  Google Scholar 

  37. 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(5), 1348–1356.

    Article  Google Scholar 

  38. Hunger, M., Sabariego, C., Stollenwerk, B., Cieza, A., & Leidl, R. (2012). Validity, reliability and responsiveness of the EQ-5D in German stroke patients undergoing rehabilitation. Quality of Life Research, 21(7), 1205–1216. https://doi.org/10.1007/s11136-011-0024-3

    Article  PubMed  Google Scholar 

  39. Janssen, M. F., Bonsel, G. J., & Luo, N. (2018). Is EQ-5D-5L better than EQ-5D-3L? A head-to-head comparison of descriptive systems and value sets from seven countries. PharmacoEconomics, 36(6), 675–697. https://doi.org/10.1007/s40273-018-0623-8

    Article  PubMed  PubMed Central  Google Scholar 

  40. Kelly, M. L., Rosenbaum, B. P., Kshettry, V. R., & Weil, R. J. (2014). Comparing clinician- and patient-reported outcome measures after hemicraniectomy for ischemic stroke. Clinical Neurology and Neurosurgery, 126, 24–29. https://doi.org/10.1016/j.clineuro.2014.08.007

    Article  PubMed  Google Scholar 

  41. Lu, W. S., Huang, S. L., Yang, J. F., Chen, M. H., Hsieh, C. L., & Chou, C. Y. (2016). Convergent validity and responsiveness of the EQ-5D utility weights for stroke survivors. Journal of Rehabilitation Medicine, 48(4), 346–351. https://doi.org/10.2340/16501977-2069

    Article  PubMed  Google Scholar 

  42. McDonnell, M. N., Mackintosh, S. F., Hillier, S. L., & Bryan, J. (2014). Regular group exercise is associated with improved mood but not quality of life following stroke. PeerJ, 2, e331. https://doi.org/10.7717/peerj.331

    Article  PubMed  PubMed Central  Google Scholar 

  43. Madden, S., Hopman, W. M., Bagg, S., Verner, J., & O’Callaghan, C. J. (2006). Functional status and health-related quality of life during inpatient stroke rehabilitation. American Journal of Physical Medicine & Rehabilitation, 85(10), 831–838; quiz 839–841, 857. https://doi.org/10.1097/01.phm.0000240666.24142.f7

    Article  Google Scholar 

  44. Mar, J., Masjuan, J., Oliva-Moreno, J., Gonzalez-Rojas, N., Becerra, V., Casado, M. A., et al. (2015). Outcomes measured by mortality rates, quality of life and degree of autonomy in the first year in stroke units in Spain. Health and Quality of Life Outcomes, 13, 36. https://doi.org/10.1186/s12955-015-0230-8

    Article  PubMed  PubMed Central  Google Scholar 

  45. Min, K. B., & Min, J. Y. (2015). Health-related quality of life is associated with stroke deficits in older adults. Age and Ageing, 44(4), 700–704. https://doi.org/10.1093/ageing/afv060

    Article  PubMed  Google Scholar 

  46. O’Mahony, P. G., Rodgers, H., Thomson, R. G., Dobson, R., & James, O. F. (1998). Is the SF-36 suitable for assessing health status of older stroke patients? Age and Ageing, 27(1), 19–22.

    Article  CAS  Google Scholar 

  47. Peters, M., Crocker, H., Dummett, S., Jenkinson, C., Doll, H., & Fitzpatrick, R. (2014). Change in health status in long-term conditions over a one year period: A cohort survey using patient-reported outcome measures. Health and Quality of Life Outcomes, 12, 123. https://doi.org/10.1186/s12955-014-0123-2

    Article  PubMed  PubMed Central  Google Scholar 

  48. Pickard, A. S., Johnson, J. A., & Feeny, D. H. (2005). Responsiveness of generic health-related quality of life measures in stroke. Quality of Life Research, 14(1), 207–219.

    Article  Google Scholar 

  49. Ronne-Engstrom, E., Enblad, P., & Lundstrom, E. (2013). Health-related quality of life at median 12 months after aneurysmal subarachnoid hemorrhage, measured with EuroQoL-5D. Acta Neurochirurgica (Wien), 155(4), 587–593. https://doi.org/10.1007/s00701-012-1612-x

    Article  Google Scholar 

  50. Schmid, A. A., Van Puymbroeck, M., Altenburger, P. A., Miller, K. K., Combs, S. A., & Page, S. J. (2013). Balance is associated with quality of life in chronic stroke. Topics in Stroke Rehabilitation, 20(4), 340–346. https://doi.org/10.1310/tsr2004-340

    Article  PubMed  Google Scholar 

  51. Sturm, J. W., Osborne, R. H., Dewey, H. M., Donnan, G. A., Macdonell, R. A., & Thrift, A. G. (2002). Brief comprehensive quality of life assessment after stroke: The assessment of quality of life instrument in the north East Melbourne stroke incidence study (NEMESIS). Stroke, 33(12), 2888–2894.

    Article  Google Scholar 

  52. van Eeden, M., van Heugten, C., van Mastrigt, G. A., van Mierlo, M., Visser-Meily, J. M., & Evers, S. M. (2015). The burden of stroke in the Netherlands: Estimating quality of life and costs for 1 year poststroke. British Medical Journal Open, 5(11), e008220. https://doi.org/10.1136/bmjopen-2015-008220

    Article  Google Scholar 

  53. Wilkinson, P. R., Wolfe, C. D., Warburton, F. G., Rudd, A. G., Howard, R. S., Ross-Russell, R. W., et al. (1997). Longer term quality of life and outcome in stroke patients: Is the Barthel index alone an adequate measure of outcome? Quality in Health Care, 6(3), 125–130.

    Article  CAS  Google Scholar 

  54. Williams, L. S., Weinberger, M., Harris, L. E., & Biller, J. (1999). Measuring quality of life in a way that is meaningful to stroke patients. Neurology, 53(8), 1839–1843.

    Article  CAS  Google Scholar 

  55. Xie, J., Wu, E. Q., Zheng, Z. J., Croft, J. B., Greenlund, K. J., Mensah, G. A., et al. (2006). Impact of stroke on health-related quality of life in the noninstitutionalized population in the United States. Stroke, 37(10), 2567–2572. https://doi.org/10.1161/01.STR.0000240506.34616.10

    Article  PubMed  Google Scholar 

  56. Polinder, S., Haagsma, J. A., van Klaveren, D., Steyerberg, E. W., & van Beeck, E. F. (2015). Health-related quality of life after TBI: A systematic review of study design, instruments, measurement properties, and outcome. Population Health Metrics, 13, 4. https://doi.org/10.1186/s12963-015-0037-1

    Article  PubMed  PubMed Central  Google Scholar 

  57. Prinsen, C. A. C., Mokkink, L. B., Bouter, L. M., Alonso, J., Patrick, D. L., de Vet, H. C. W., et al. (2018). COSMIN guideline for systematic reviews of patient-reported outcome measures. Quality of Life Research, 27(5), 1147–1157. https://doi.org/10.1007/s11136-018-1798-3

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  58. Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., et al. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: A Delphi study. Quality of Life Research, 27(5), 1159–1170. https://doi.org/10.1007/s11136-018-1829-0

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  59. Mokkink, L. B., de Vet, H. C. W., Prinsen, C. A. C., Patrick, D. L., Alonso, J., Bouter, L. M., et al. (2018). COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures. Quality of Life Research, 27(5), 1171–1179. https://doi.org/10.1007/s11136-017-1765-4

    Article  CAS  PubMed  Google Scholar 

Download references

Funding

Natasha Lannin is supported by National Heart Foundation of Australia Future Leader Fellowship (102055).

Author information

Authors and Affiliations

  1. Alfred Health, Melbourne, Australia

    Lisa J. Cameron & Laura Jolliffe

  2. School of Health Sciences, College of Health, Medicine and Wellbeing, The University of Newcastle, Callaghan, Australia

    Kylie Wales

  3. School of Nursing and Midwifery, La Trobe University, Bundoora, Australia

    Angela Casey

  4. School of Allied Health, Human Services and Sport (Occupational Therapy), La Trobe University, Bundoora, Australia

    Natasha A. Lannin

  5. Wagga Wagga Ambulatory Rehabilitation Service, Murrumbidgee Local Health District, Wagga Wagga, Australia

    Shannon Pike

  6. Department of Occupational Therapy, Faculty of Medicine, Nursing, and Health Sciences, Monash University, Frankston, Australia

    Laura Jolliffe

  7. Occupational Therapy Department, Alfred Health, Melbourne, Australia

    Emma J. Schneider & Natasha A. Lannin

  8. Allied Health Research Unit and Nursing Research Institute, St Vincent’s Health Network Sydney, Darlinghurst, Australia

    Lauren J. Christie

  9. Health and Social Care Economics Group, Caring Futures Institute, Flinders University, Adelaide, Australia

    Julie Ratcliffe

  10. Department of Neurosciences, Central Clinical School, Monash University, 99 Commercial Road, Melbourne, VIC, 3004, Australia

    Laura Jolliffe, Emma J. Schneider & Natasha A. Lannin

Authors
  1. Lisa J. Cameron
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kylie Wales
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Angela Casey
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Shannon Pike
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Laura Jolliffe
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Emma J. Schneider
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Lauren J. Christie
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Julie Ratcliffe
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Natasha A. Lannin
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Natasha A. Lannin.

Ethics declarations

Conflict of interest

The authors have no relevant financial or non-financial interests to disclose.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 35 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Cameron, L.J., Wales, K., Casey, A. et al. Self-reported quality of life following stroke: a systematic review of instruments with a focus on their psychometric properties. Qual Life Res 31, 329–342 (2022). https://doi.org/10.1007/s11136-021-02944-9

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-021-02944-9

Keywords

Search

Navigation