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


Journal

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
ISSN: 1573-2649
Titre abrégé: Qual Life Res
Pays: Netherlands
ID NLM: 9210257

Informations de publication

Date de publication:
Feb 2022
Historique:
accepted: 06 07 2021
pubmed: 12 7 2021
medline: 19 2 2022
entrez: 11 7 2021
Statut: ppublish

Résumé

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. 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. 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. 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.

Identifiants

pubmed: 34247327
doi: 10.1007/s11136-021-02944-9
pii: 10.1007/s11136-021-02944-9
doi:

Types de publication

Journal Article Systematic Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

329-342

Informations de copyright

© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.

Références

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
doi: 10.1016/j.wneu.2011.07.023 pubmed: 22182277
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
doi: 10.1007/s11136-007-9247-8 pubmed: 17665314
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
doi: 10.1177/2050312117752031 pubmed: 29344360 pmcid: 5764138
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
doi: 10.1186/s12883-018-1101-9 pubmed: 30021558 pmcid: 6052666
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
doi: 10.1016/j.jstrokecerebrovasdis.2010.02.020 pubmed: 20813545
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.0b013e3282fc0f33
doi: 10.1097/MRR.0b013e3282fc0f33 pubmed: 18467925
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.
doi: 10.1161/01.STR.30.7.1362
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
doi: 10.1586/erp.11.104
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
doi: 10.1007/s11136-007-9174-8 pubmed: 17294283
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.
doi: 10.1016/S0003-9993(03)00035-2
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.
doi: 10.1161/01.STR.24.2.320
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.
doi: 10.1161/01.STR.31.8.2004
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.
doi: 10.2165/00019053-200119020-00004
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
doi: 10.1007/s11136-011-9960-1 pubmed: 21732199
EuroQol, G. (1990). EuroQol—A new facility for the measurement of health-related quality of life. Health Policy, 16(3), 199–208.
doi: 10.1016/0168-8510(90)90421-9
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.
doi: 10.1097/00005650-199206000-00002
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.
doi: 10.1016/S0167-6296(01)00130-8
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.
doi: 10.1023/A:1008815005736
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
doi: 10.1016/j.jclinepi.2006.03.012 pubmed: 17161752
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
doi: 10.1016/j.joca.2012.08.015 pubmed: 22944525
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
doi: 10.1371/journal.pone.0147980 pubmed: 26859678 pmcid: 4747506
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
doi: 10.1016/j.jval.2017.04.008 pubmed: 28964449
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.
doi: 10.1161/01.STR.27.10.1812
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
doi: 10.1177/0269215519834064 pubmed: 30834774
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
doi: 10.1007/s10198-007-0068-z pubmed: 17605057
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
doi: 10.1002/hec.1298 pubmed: 17893863
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
doi: 10.1097/md.0000000000015130
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
doi: 10.1159/000047775 pubmed: 11914537
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.
doi: 10.1080/02688699650040359
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.
doi: 10.1161/01.STR.28.10.1876
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.
doi: 10.1161/01.STR.29.1.63
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.
doi: 10.1161/01.STR.30.10.2146
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.
doi: 10.1161/01.STR.28.4.740
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
doi: 10.1186/s12955-015-0340-3 pubmed: 26415945 pmcid: 4587810
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.
doi: 10.1046/j.0309-2402.2003.02829.x
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.
doi: 10.1161/01.STR.0000015030.59594.B3
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
doi: 10.1007/s11136-011-0024-3 pubmed: 21971874
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
doi: 10.1007/s40273-018-0623-8 pubmed: 29470821 pmcid: 5954015
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
doi: 10.1016/j.clineuro.2014.08.007 pubmed: 25194307
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
doi: 10.2340/16501977-2069 pubmed: 26998880
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
doi: 10.7717/peerj.331 pubmed: 24749010 pmcid: 3976114
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
doi: 10.1097/01.phm.0000240666.24142.f7
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
doi: 10.1186/s12955-015-0230-8 pubmed: 25889480 pmcid: 4391532
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
doi: 10.1093/ageing/afv060 pubmed: 25994186
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.
doi: 10.1093/ageing/27.1.19
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
doi: 10.1186/s12955-014-0123-2 pubmed: 25113415 pmcid: 4243951
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.
doi: 10.1007/s11136-004-3928-3
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
doi: 10.1007/s00701-012-1612-x
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
doi: 10.1310/tsr2004-340 pubmed: 23893833
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.
doi: 10.1161/01.STR.0000040407.44712.C7
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
doi: 10.1136/bmjopen-2015-008220
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.
doi: 10.1136/qshc.6.3.125
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.
doi: 10.1212/WNL.53.8.1839
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
doi: 10.1161/01.STR.0000240506.34616.10 pubmed: 16946158
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
doi: 10.1186/s12963-015-0037-1 pubmed: 25722656 pmcid: 4342191
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
doi: 10.1007/s11136-018-1798-3 pubmed: 29435801 pmcid: 5891568
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
doi: 10.1007/s11136-018-1829-0 pubmed: 29550964 pmcid: 5891557
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
doi: 10.1007/s11136-017-1765-4 pubmed: 29260445

Auteurs

Lisa J Cameron (LJ)

Alfred Health, Melbourne, Australia.

Kylie Wales (K)

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

Angela Casey (A)

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

Shannon Pike (S)

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

Laura Jolliffe (L)

Alfred Health, Melbourne, Australia.
Department of Occupational Therapy, Faculty of Medicine, Nursing, and Health Sciences, Monash University, Frankston, Australia.
Department of Neurosciences, Central Clinical School, Monash University, 99 Commercial Road, Melbourne, VIC, 3004, Australia.

Emma J Schneider (EJ)

Occupational Therapy Department, Alfred Health, Melbourne, Australia.
Department of Neurosciences, Central Clinical School, Monash University, 99 Commercial Road, Melbourne, VIC, 3004, Australia.

Lauren J Christie (LJ)

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

Julie Ratcliffe (J)

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

Natasha A Lannin (NA)

School of Allied Health, Human Services and Sport (Occupational Therapy), La Trobe University, Bundoora, Australia. Natasha.Lannin@monash.edu.
Occupational Therapy Department, Alfred Health, Melbourne, Australia. Natasha.Lannin@monash.edu.
Department of Neurosciences, Central Clinical School, Monash University, 99 Commercial Road, Melbourne, VIC, 3004, Australia. Natasha.Lannin@monash.edu.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH