Top

Gepubliceerd in:

10-07-2021

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

Auteurs: Lisa J. Cameron, Kylie Wales, Angela Casey, Shannon Pike, Laura Jolliffe, Emma J. Schneider, Lauren J. Christie, Julie Ratcliffe, Natasha A. Lannin

Gepubliceerd in: Quality of Life Research | Uitgave 2/2022

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.

vorige artikel The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force

volgende artikel Health utilities in pediatric cancer patients and survivors: a systematic review and meta-analysis for clinical implementation

Alleen toegankelijk voor geautoriseerde gebruikers

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.2011.07.023CrossRefPubMed

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/s11136-007-9247-8CrossRefPubMed

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/10.1177/2050312117752031CrossRefPubMedPubMedCentral

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/s12883-018-1101-9CrossRefPubMedPubMedCentral

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.2010.02.020CrossRefPubMed

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

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.0b013e3282fc0f33CrossRefPubMed

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.CrossRef

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.11.104CrossRef

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/s11136-007-9174-8CrossRefPubMed

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.CrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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/s11136-011-9960-1CrossRefPubMed

16.

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

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.CrossRef

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.CrossRef

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.CrossRef

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.2006.03.012CrossRefPubMed

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.2012.08.015CrossRefPubMed

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.0147980CrossRefPubMedPubMedCentral

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.2017.04.008CrossRefPubMed

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.CrossRef

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/10.1177/0269215519834064CrossRefPubMed

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-zCrossRefPubMed

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.1298CrossRefPubMed

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.0000000000015130CrossRef

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/10.1159/000047775CrossRefPubMed

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.CrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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/s12955-015-0340-3CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRef

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/s11136-011-0024-3CrossRefPubMed

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/s40273-018-0623-8CrossRefPubMedPubMedCentral

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.2014.08.007CrossRefPubMed

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/10.2340/16501977-2069CrossRefPubMed

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.331CrossRefPubMedPubMedCentral

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.f7CrossRef

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/s12955-015-0230-8CrossRefPubMedPubMedCentral

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/afv060CrossRefPubMed

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.CrossRef

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/s12955-014-0123-2CrossRefPubMedPubMedCentral

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.CrossRef

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-xCrossRef

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/tsr2004-340CrossRefPubMed

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.CrossRef

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-2015-008220CrossRef

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.CrossRef

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.CrossRef

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.0000240506.34616.10CrossRefPubMed

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/s12963-015-0037-1CrossRefPubMedPubMedCentral

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/s11136-018-1798-3CrossRefPubMedPubMedCentral

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/s11136-018-1829-0CrossRefPubMedPubMedCentral

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/s11136-017-1765-4CrossRefPubMed

Titel: Self-reported quality of life following stroke: a systematic review of instruments with a focus on their psychometric properties
Auteurs: Lisa J. Cameron
Kylie Wales
Angela Casey
Shannon Pike
Laura Jolliffe
Emma J. Schneider
Lauren J. Christie
Julie Ratcliffe
Natasha A. Lannin
Publicatiedatum: 10-07-2021
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 2/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-021-02944-9

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 2/2022

Belgian population norms for the EQ-5D-5L, 2018

Response shift after coronary revascularization

The Mental Health Quality of Life Questionnaire (MHQoL): development and first psychometric evaluation of a new measure to assess quality of life in people with mental health problems

Does depression in multiple sclerosis mediate effects of cognitive functioning on quality of life?

The association of body mass index with quality of life and working ability: a Finnish population-based study

Development of prognostic models for Health-Related Quality of Life following traumatic brain injury