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Development of a Stroke-Specific Quality of Life Scale
Open accessAbstract
Background and Purpose —Clinical stroke trials are increasingly measuring patient-centered outcomes such as functional status and health-related quality of life (HRQOL). No stroke-specific HRQOL measure is currently available. This study presents the initial development of a valid, reliable, and responsive stroke-specific quality of life (SS-QOL) measure, for use in stroke trials. Methods —Domains and items for the SS-QOL were developed from patient interviews. The SS-QOL, Short Form 36, Beck Depression Inventory, National Institutes of Health Stroke Scale, and Barthel Index were administered to patients 1 and 3 months after ischemic stroke. Items were eliminated with the use of standard psychometric criteria. Construct validity was assessed by comparing domain scores with similar domains of established measures. Domain responsiveness was assessed with standardized effect sizes . Results —All 12 domains of the SS-QOL were unidimensional. In the final 49-item scale, all domains demonstrated excellent internal reliability (Cronbach’s α values for each domain ≥0.73). Most domains were moderately correlated with similar domains of established outcome measures ( r 2 range, 0.3 to 0.5). Most domains were responsive to change (standardized effect sizes >0.4). One- and 3-month SS-QOL scores were associated with patients’ self-report of HRQOL compared with before their stroke ( P <0.001). Conclusions —The SS-QOL measures HRQOL, its primary underlying construct, in stroke patients. Preliminary results regarding the reliability, validity, and responsiveness of the SS-QOL are encouraging. Further studies in diverse stroke populations are needed.
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Stroke Caregiver Outcomes from the Telephone Assessment and Skill-Building Kit (TASK)
Bakas, T., Farran, C. J., AUSTIN, J. K., Given, B. A., Johnson, E. A., & Williams, L. S. (2009) · Topics in Stroke Rehabilitation · doi:10.1310/tsr1602-105 · Cited by 101
Self-citationAdded Value of Patient‐Reported Outcome Measures in Stroke Clinical Practice
Katzan, I. L., Thompson, N. R., Lapin, B. R., & Uchino, K. (2017) · Journal of the American Heart Association · doi:10.1161/jaha.116.005356 · Cited by 103
Quality of life of post-stroke patients and their caregivers.
Opara, J. A., & Jaracz, K. (2010) · PubMed Central · Cited by 98
Goff, D. C., Brass, L. M., Braun, L. T., Croft, J. B., Flesch, J. D., Fowkes, F. G. R., Hong, Y., Howard, V. J., Huston, S., Jencks, S. F., et al. (2006) · Circulation · doi:10.1161/circulationaha.106.179904 · Cited by 97
Muus, I., Williams, L. S., & Ringsberg, K. C. (2007) · Clinical Rehabilitation · doi:10.1177/0269215507075504 · Cited by 97
Self-citationInterventions for visual field defects in people with stroke
Pollock, A., Hazelton, C., Rowe, F. J., Jonuscheit, S., Kernohan, A., Angilley, J., Henderson, C. A., Langhorne, P., & Campbell, P. (2019) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd008388.pub3 · Cited by 96
Determining quality of life in stroke survivors
Carod-Artal, F. J. (2012) · Expert Review of Pharmacoeconomics & Outcomes Research · doi:10.1586/erp.11.104 · Cited by 97
Chen, H.-Y., Baumgardner, D. J., & Rice, J. P. (2011) · PubMed Central · Cited by 93
Allen, K. R., Hazelett, S. E., Jarjoura, D. G., Hua, K., Wright, K., Weinhardt, J., & Kropp, D. J. (2009) · Journal of Stroke and Cerebrovascular Diseases · doi:10.1016/j.jstrokecerebrovasdis.2009.02.002 · Cited by 92
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) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2003.11.016 · Cited by 91
Determinants of quality of life (QoL) in elderly stroke patients: A short-term follow-up study
Günaydın, R., Karatepe, A. G., Kaya, T., & Ulutaş, Ö. (2010) · Archives of Gerontology and Geriatrics · doi:10.1016/j.archger.2010.06.004 · Cited by 91
“The SSQoL (Williams et al., 1999), which is a disease-specific QoL measure, consists of 49 items encompassing 12 domains (social role, mobility, energy, language, self-care, mood, personality, thinking, upper-extremity function, family role, vision, and work/productivity).”
BackgroundMethodInfluentialBrief Comprehensive Quality of Life Assessment After Stroke
Sturm, J. W., Osborne, R. H., Dewey, H. M., Donnan, G. A., Macdonell, R. A. L., & Thrift, A. G. (2002) · Stroke · doi:10.1161/01.str.0000040407.44712.c7 · Cited by 91
Hope, health work and quality of life in families of stroke survivors
Bluvol, A., & Ford‐Gilboe, M. (2004) · Journal of Advanced Nursing · doi:10.1111/j.1365-2648.2004.03004.x · Cited by 88
“Assessing quality of life has been challenging, given that individuals have different deficits and concurrent psychological and social sequelae ( Williams et al. 1999 ).”
BackgroundMcKenna, S., Jones, F., Glenfield, P., & Lennon, S. (2013) · International Journal of Stroke · doi:10.1111/ijs.12195 · Cited by 88
The effects of balance and gait function on quality of life of stroke patients
Park, J., & Kim, T.-H. (2019) · Neurorehabilitation · doi:10.3233/nre-182467 · Cited by 87
Long-Term Outcomes of Pediatric Ischemic Stroke in Adulthood
Elbers, J. M., deVeber, G., Pontigon, A., & Moharir, M. D. (2013) · Journal of Child Neurology · doi:10.1177/0883073813484358 · Cited by 87
Social dysfunctioning after mild to moderate first-ever stroke at vocational age
Hommel, M., Trabucco-Miguel, S., Joray, S., Naëgelé, B., Gonnet, N., & Jaillard, A. S. (2008) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.2008.157875 · Cited by 87
Hula, W. D., Doyle, P. J., Stone, C. A., Hula, S. N. A., Kellough, S., Wambaugh, J. L., Ross, K., Schumacher, J. G., & Jacque, A. S. (2015) · Journal of Speech Language and Hearing Research · doi:10.1044/2015_jslhr-l-14-0235 · Cited by 86
Grau‐Sánchez, J., Duarte, E., Ramos‐Escobar, N., Sierpowska, J., Rueda, N., Redón, S., Heras, M. V. D. L., Pedro, J., Särkämö, T., & Rodríguez‐Fornells, A. (2018) · Annals of the New York Academy of Sciences · doi:10.1111/nyas.13590 · Cited by 84
Lin, K., Fu, T. S.-T., Wu, C., & Hsieh, C.-J. (2011) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-9-5 · Cited by 85
“Of the stroke-specific scales, the Stroke-Specific Quality of Life Scale (SS-QOL) [13], in addition to the Stroke Impact Scale version 3.”
BackgroundMethodDynamic reorganization of TMS-evoked activity in subcortical stroke patients
Pellicciari, M. C., Bonnı̀, S., Ponzo, V., Cinnera, A. M., Mancini, M., Casula, E. P., Sallustio, F., Paolucci, S., Caltagirone, C., & Koch, G. (2018) · NeuroImage · doi:10.1016/j.neuroimage.2018.04.011 · Cited by 85
Mole, J. A., & Demeyere, N. (2018) · Neuropsychological Rehabilitation · doi:10.1080/09602011.2018.1464934 · Cited by 81
Chen, Y.-K., Qu, J., Xiao, W., Li, W.-Y., Weng, H.-Y., Li, W., Liu, Y.-L., Luo, G., Fang, X.-W., Ungvari, G. S., et al. (2014) · International Journal of Stroke · doi:10.1111/ijs.12409 · Cited by 83
Psychosocial Aspects of Aphasia: Whose Perspectives?
Parr, S. (2001) · Folia Phoniatrica et Logopaedica · doi:10.1159/000052681 · Cited by 83
“Reliable and valid stroke-specific quality of life measurements that address some psychosocial aspects of stroke, including work/productivity, mood and family roles [Williams et al., 1999] are currently being adapted for use with people who have aphasia [Hilari, 2000].”
BackgroundMethodAdams, H. P., Powers, W. J., Grubb, R. L., Clarke, W. R., & Woolson, R. F. (2001) · Neurosurgery Clinics of North America · doi:10.1016/s1042-3680(18)30047-0 · Cited by 83
Metadata
- Authors
- Williams, L. S., Weinberger, M., Harris, L. E., Clark, D. O., & Biller, J.
- Affiliations
- Regenstrief Institute (US)
- From Roudebush Veterans Affairs Medical Center (L.S.W., M.W.); Departments of Neurology (L.S.W., J.B.) and Medicine (M.W., L.E.H., D.O.C.), Indiana University School of Medicine; and Regenstrief Institute for Health Care (L.S.W., M.W., L.E.H., D.O.C.), Indianapolis, Ind.
- Venue
- Stroke
- Published
- 1999-07
- Volume
- 30
- Issue
- 7
- Pages
- 1362-1369
- ISSN
- 0039-2499 (ISSN-L)
- 1524-4628
- OpenAlex
- W2151560640
- Cited by
- 914
- References
- 19
- Citations by year
- 2026: 51 · 2025: 54 · 2024: 66 · 2023: 60 · 2022: 45 · 2021: 55 · 2020: 56 · 2019: 49 · 2018: 48 · 2017: 31 · 2016: 41 · 2015: 35 · 2014: 36 · 2013: 32 · 2012: 29
- FWCI
- 8.87
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Stroke (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Office of Research and Development
- Health Services Research and Development
- Topics
- Health Sciences › Medicine › Rehabilitation › Stroke Rehabilitation and Recovery
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Nursing › Research and Theory › Health Education and Validation
- Keywords
- stroke-specific quality of life, health-related quality of life, ischemic stroke, patient-centered outcomes, stroke trials, scale development, construct validity, responsiveness, internal consistency, patient interviews
- MeSH terms
- Adult, Affect, Aged, Cerebral Infarction, Brain Ischemia, Cognition, Fatigue, Female, Follow-Up Studies, Humans, Locomotion, Male, Middle Aged, Movement, Personality, Quality of Life, Surveys and Questionnaires, Role, Self Care, Speech, Vision, Ocular, Work, Reproducibility of Results
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