Cited by 914Stroke Rehabilitation and RecoveryHealth Systems, Economic Evaluations, Quality of LifeHealth Education and Validation

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Development of a Stroke-Specific Quality of Life Scale

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Williams, Linda S., Weinberger, Morris, Harris, Lisa E., Clark, Daniel O., Biller, José·1999·Stroke

DOI 10.1161/01.str.30.7.1362

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Abstract

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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Background
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Method
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Background
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Background
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Background
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Background
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“extremity function, vision, and work/productivity [50].”
Background
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Method
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Method
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Validity of the modified Rankin Scale in patients with aneurysmal subarachnoid hemorrhage: a randomized study
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“All patients also completed the following PROMs: EuroQoL 5D-5L (EQ-5D-5L) [15], research and development-36 (RAND-36) [16] and the short version of the Stroke Specific Quality of Life scale (SS-QoL) [17].”
BackgroundMethod
Can the health related quality of life measure QOLIBRI- overall scale (OS) be of use after stroke? A validation study
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Using Patient-Reported Outcomes to Assess Healthcare Quality: Toward Better Measurement of Patient-Centered Care in Cardiovascular Disease
Garcia, R. A., & Spertus, J. A. (2021) · Methodist DeBakey Cardiovascular Journal · doi:10.14797/vuwd7697 · Cited by 16
Prevalence and determinants of post-stroke sleep disorders: a cross-sectional hospital-based study
Tayade, K., Vibha, D., Singh, R. K., Pandit, A. K., Ramanujam, B., Das, A., Elavarasi, A., Agarwal, A., Srivastava, A. K., & Tripathi, M. (2023) · Sleep And Breathing · doi:10.1007/s11325-023-02850-z · Cited by 16
“Post-stroke quality of life was assessed by using Stroke Specific quality of life (SS-QoL) [16] questionnaire.”
Method
Effect of acupuncture on insomnia following stroke: study protocol for a randomized controlled trial
Cao, Y., Yin, X., Soto-Aguilar, F., Liu, Y., Yin, P., Wu, J., Zhu, B.-C., Li, W., Lao, L., & Xu, S. (2016) · Trials · doi:10.1186/s13063-016-1670-0 · Cited by 15
“Stroke-Specific Quality of Life The SS-QOL is used to assess the health-related quality of life of stroke patients in the past week [21].”
Method
EFFICACY OF MODIFIED CONSTRAINT-INDUCED MOVEMENT THERAPY FOR LOWER EXTREMITY IN PATIENTS WITH STROKE: STRENGTH AND QUALITY OF LIFE OUTCOMES
Candan, S. A., & Livanelioğlu, A. (2019) · Türk fizyoterapi ve rehabilitasyon dergisi · doi:10.21653/tfrd.406349 · Cited by 15
“Brunnstrom Recovery Stage, n (%) III IV 12 (80) 3 (20) 11 (73.”
Background
Reliability and Validity of the Korean Version of Stroke-Specific Quality of Life Questionnaire
Kim, M., & Lee, Y. (2020) · Journal of Neuroscience Nursing · doi:10.1097/jnn.0000000000000560 · Cited by 16
“The SSQOL is a scale to measure HRQOL in stroke patients.(11) The SSQOL consists of 49 questions in 12 domains.”
Method
Short-term prognosis for speech and language in first stroke patients
de Oliveira, F. F., & Damasceno, B. P. (2009) · Arquivos de Neuro-Psiquiatria · doi:10.1590/s0004-282x2009000500013 · Cited by 15
The impact of stroke: insights from patients in Taiwan
Lee, Y., Chen, Y., Hsueh, I., Wang, Y., & Hsieh, C. (2010) · Occupational Therapy International · doi:10.1002/oti.301 · Cited by 15
Dual task training for improving balance and gait in people with stroke
Hofheinz, M., Mibs, M., & Elsner, B. (2016) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd012403 · Cited by 15
Outcome Measures in Stroke
Yamamoto, L., & Magalong, E. (2003) · Critical Care Nursing Quarterly · doi:10.1097/00002727-200310000-00004 · Cited by 15
The effects of kinesiophobia, fatigue, and quality of life on physical activity in patients with stroke
Sütçü, G., & Kılınç, M. (2024) · Topics in Stroke Rehabilitation · doi:10.1080/10749357.2024.2333159 · Cited by 14
“27 The Turkish validity and reliability study of the scale was conducted by Hakverdioğlu et al. 28”
G-Exos: A wearable gait exoskeleton for walk assistance
Zorkot, M., Dac, L. H., Morya, E., & Brasil, F. L. (2022) · Frontiers in Neurorobotics · doi:10.3389/fnbot.2022.939241 · Cited by 14
“The first questionnaire was the Stroke-specific Quality of Life Scale (Stroke-Scale), a standard health protocol submitted for analyzing the quality of life and limitations of individuals with stroke (Williams et al., 1999).”
Method
Comparison of construct validity of two short forms of Stroke-Specific Quality of Life scale
Chou, C.-Y., Huang, C., Huang, Y., Lin, G., Huang, S., Lee, S., & Hsieh, C. (2017) · PLoS ONE · doi:10.1371/journal.pone.0188478 · Cited by 14
Safety of Performing a Graded Exercise Test Early after Stroke and Transient Ischemic Attack
Johnson, L. G., Kramer, S. F., Catanzariti, G., Kaffenberger, T., Cumming, T. B., & Bernhardt, J. A. (2019) · PM&R · doi:10.1002/pmrj.12259 · Cited by 14
Responsiveness and sensitivity of the Stroke Specific Quality of Life Scale Danish version
Muus, I., Christensen, D. F., Petzold, M., Harder, I., Johnsen, S. P., Kirkevold, M., & Ringsberg, K. C. (2011) · Disability and Rehabilitation · doi:10.3109/09638288.2011.573901 · Cited by 14
“[11] reported SSQOL a slightly more responsive.”
The COMPlaints After Stroke (COMPAS) study: protocol for a Dutch cohort study on poststroke subjective cognitive complaints
van Rijsbergen, M. W. A., Mark, R. E., de Kort, P. L. M., & Sitskoorn, M. M. (2013) · BMJ Open · doi:10.1136/bmjopen-2013-003599 · Cited by 14
Prognosis after Stroke
Rundek, T., & Sacco, R. L. (2011) · Elsevier eBooks · doi:10.1016/b978-1-4160-5478-8.10015-6 · Cited by 14
Clinically important difference of Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage
Wong, G. K. C., Lee, A. P., Wong, A., Ho, F. L. Y., Leung, S. L. Y., Zee, B. C.-Y., Poon, W. S., Siu, D. Y. W., Abrigo, J., & Mok, V. (2016) · Journal of Clinical Neuroscience · doi:10.1016/j.jocn.2016.05.029 · Cited by 14
“Stroke-specific Quality of Life Scale (SS-QOL) is one of the commonest disease-specific quality of life measures initially developed and validated for ischemic stroke patients in 1999 [10], and subsequently, in mixed ischemic and hemorrhagic stroke patients in 2007 [11].”
The feasibility and test–retest reliability of the Dutch Swal-Qol adapted interview version for dysphagic patients with communicative and/or cognitive problems
Lemmens, J., Bours, G. J. J. W., Limburg, M., & Beurskens, A. J. H. M. (2012) · Quality of Life Research · doi:10.1007/s11136-012-0202-y · Cited by 14
An algorithm of walk phase estimation with only treadmill motor current
Ohki, E., Nakashima, Y., Ando, T., & Fujie, M. G. (2009) · IEEE/RSJ International Conference on Intelligent Robots and Systems (IROS) · doi:10.1109/iros.2009.5354495 · Cited by 14
“For hemiplegic patients, mobility has strong correlation on quality of life [2].”
Background
Adaptive sports for promoting physical activity in community-dwelling adults with stroke: A feasibility study
Nayak, P., Mahmood, A., Senthil Kumaran, D., Natarajan, M., Unnikrishnan, B., & Solomon, J. M. (2021) · Journal of Bodywork and Movement Therapies · doi:10.1016/j.jbmt.2021.07.004 · Cited by 14
The effects of royal jelly supplementation on oxidative stress, inflammatory mediators, mental health, cognitive function, quality of life, and clinical outcomes of patients with ischemic stroke: study protocol for a randomized controlled trial
Karimi, E., Khorvash, F., Arab, A., Sepidarkish, M., Saadatnia, M., & Amani, R. (2023) · BMC Nutrition · doi:10.1186/s40795-023-00690-4 · Cited by 13
“Higher values indicate a better quality of life and lower values indicate poorer quality of life [35].”
Background
Immersive Virtual Reality for Treatment of Unilateral Spatial Neglect via Eye-Tracking Biofeedback: RCT Protocol and Usability Testing
Cinnera, A. M., Verna, V., Marucci, M., Tavernese, A., Magnotti, L., Matano, A., D’Acunto, C., Paolucci, S., Morone, G., Betti, V., et al. (2024) · Brain Sciences · doi:10.3390/brainsci14030283 · Cited by 12
“…assessment of constructive apraxia [27]; (v) the Stroke-Specific Quality of Life Scale (SSQoL) for the assessment of health-related quality of life after stroke [28]; and (vi) the Fugl–Meyer Assessment scale (FMA) for the assessment of sensorimotor function of the upper and lower extremities [29].”
Method
Safety & efficacy of a robotic hip exoskeleton on outpatient stroke rehabilitation
Macaluso, R., Giffhorn, M., Prokup, S., Cleland, B. T., Lee, J., Lim, B., Lee, M., Lee, H.-J., Madhavan, S., & Jayaraman, A. (2024) · Journal of NeuroEngineering and Rehabilitation · doi:10.1186/s12984-024-01421-x · Cited by 13
“Patient reported measures included the Modified Falls Efficacy Scale (mFES) [23], Activities-specific and Balance Confidence Scale (ABC) [24], Stroke Impact Scale (SIS) [25], Patient Health Questionnaire-9 (PHQ-9) [26], and Stroke Specific Quality of Life (SSQoL) [27].”
Method
Nutritional therapy for reducing disability and improving activities of daily living in people after stroke
Sakai, K., Niimi, M., Momosaki, R., Hoshino, E., Yoneoka, D., Nakayama, E., Masuoka, K., Maeda, T., Takahashi, N., & Sakata, N. (2024) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd014852.pub2 · Cited by 13
EFFECTS OF A PROTEIC SWINE EXTRACT ASSOCIATED TO RECOVERY TREATMENT ON FUNCTIONAL INDEPENDENCE AND QUALITY OF LIFE IN PATIENTS POST STROKE
Uivaroșan, D. (2018) · FARMACIA · doi:10.31925/farmacia.2018.5.12 · Cited by 13
Promoting community reintegration using narratives and skills building for young adults with stroke: a protocol for a randomised controlled trial
Lo, S. H. S., Chau, J. P. C., Choi, K. C., Shum, E. W. C., Yeung, J. H. M., & Li, S. H. (2021) · BMC Neurology · doi:10.1186/s12883-020-02015-5 · Cited by 13
Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study
Mason, B. L., Boyd, K. J., Doubal, F., Barber, M., Brady, M., Cowey, E., Visvanathan, A., Lewis, S. C., Gallacher, K., Morton, S., et al. (2021) · Stroke · doi:10.1161/strokeaha.120.032650 · Cited by 13
Translation and validation of the Taiwanese SarQoL, a quality of life questionnaire specific to sarcopenia
Lee, S., Chang, C.-F., Wang, J., & Liang, P.-J. (2022) · Journal of the Formosan Medical Association · doi:10.1016/j.jfma.2022.09.012 · Cited by 13
Feasibility study of a randomized controlled trial protocol to examine clinical effectiveness of shoulder strapping in acute stroke patients
Appel, C., Mayston, M. J., & Perry, L. (2011) · Clinical Rehabilitation · doi:10.1177/0269215510397392 · Cited by 13
“The secondary outcome measure was quality of life, measured using what was then the only tool specifically developed for use with stroke patients, the Stroke-specific Quality of Life Scale.(35,36) Preliminary findings regarding its internal reliability, construct validity and responsiveness were encouraging.”
Method
Associations between the Brief Memory and Executive Test (BMET), Activities of Daily Living, and Quality of Life in Patients with Cerebral Small Vessel Disease
Hollocks, M. J., Brookes, R. L., Morris, R. G., & Markus, H. S. (2016) · Journal of the International Neuropsychological Society · doi:10.1017/s1355617716000187 · Cited by 13
Does mode of administration affect health-related quality-of-life outcomes after stroke?
Caute, A., Northcott, S., Clarkson, L., Pring, T., & Hilari, K. (2012) · International Journal of Speech-Language Pathology · doi:10.3109/17549507.2012.663789 · Cited by 13
A Water-Based Sequential Preparatory Approach vs. Conventional Aquatic Training in Stroke Patients: A Randomized Controlled Trial With a 1-Month Follow-Up
Temperoni, G., Curcio, A., Iosa, M., Mangiarotti, M. A., Morelli, D., Angelis, S. D., Vergano, S., & Tramontano, M. (2020) · Frontiers in Neurology · doi:10.3389/fneur.2020.00466 · Cited by 12
“Secondary outcomemeasures were themodified Barthel index (BIM) (27), the Tinetti balance and gait scale (TBG) (28), and the Stroke Specific Quality Of Life Scale (SS-QOL) (29).”
MethodInfluential
Visual Problems are Associated with Long-Term Fatigue after Stroke
Pedersen, S. G., Løkholm, M. T., Friborg, O., Halvorsen, M. B., Kirkevold, M., Heiberg, G. A., & Anke, A. (2023) · Journal of Rehabilitation Medicine · doi:10.2340/jrm.v55.4813 · Cited by 12
“The reliability of the SS-QOL specific and overall scores have been documented in numerous studies, confirming an acceptable internal consistency of the domains (14, 28, 29).”
Influential
HRQOLISP-26: A Concise, Multiculturally Valid, Multidimensional, Flexible, and Reliable Stroke-Specific Measure
Owolabi, M. O. (2011) · ISRN Neurology · doi:10.5402/2011/295096 · Cited by 12
The ESCAPS study: a feasibility randomized controlled trial of early electrical stimulation to the wrist extensors and flexors to prevent post-stroke complications of pain and contractures in the paretic arm
Fletcher-Smith, J. C., Walker, D., Allatt, K., Sprigg, N., James, M., Ratib, S., Boadu, J., Richardson, C., & Pandyan, A. D. (2019) · Clinical Rehabilitation · doi:10.1177/0269215519868834 · Cited by 12
Quality of life in aphasia: differences between fluent and non-fluent aphasic Augmentative and Alternative Communication users
Bahia, M. M., & Chun, R. Y. S. (2014) · Audiology - Communication Research · doi:10.1590/s2317-64312014000300001353 · Cited by 12
“The second part, with a subscale of 12 areas, evaluates each domain at the present moment compared to the period before the stroke: energy, mood, thinking, personality, social roles, and family roles((8,9)).”
BackgroundMethod
Observation of Meaningful Activities: A Case Study of a Personalized Intervention on Poststroke Functional State
Chatterton, H. J., Ewan, L., Kinmond, K., Haire, A., Smith, N. C., & Holmes, P. S. (2008) · Neurology Report · doi:10.1097/npt.0b013e31817323dc · Cited by 12

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.
ORCID: Williams, Linda S.
Harris, Lisa E.
Clark, Daniel O.
Venue: Stroke
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 1999-07
Volume: 30
Issue: 7
Pages: 1362-1369
ISSN: 0039-2499 (ISSN-L)
1524-4628
DOI: 10.1161/01.str.30.7.1362
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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