Stroke Specific Quality Of Life Scale Research Articles

Health-Related Quality of Life After Stroke

A Danish version of the Stroke-Specific Quality of Life Scale (SSQOL-DK) has been developed for self-reporting; it contains 12 physical and psychosocial domains. The purpose of this study was (a) to assess the reliability of the proxy version of the SSQOL-DK and (b) to evaluate the influence of frequency of proxy contact on agreement. In all, 143 patients completed the SSQOL-DK 1 to 5 years post-stroke. A patient chosen proxy completed a proxy version of the same questionnaire. The proxy version showed satisfactory internal consistency (Cronbach's alpha = .85-.95). Agreement was generally high. Proxies rated the amount of trouble significantly smaller (higher score) than the patients only in the domain Social Roles. The amount of trouble in the domain Family Roles received significantly higher ratings from noncohabitant proxies when compared with patients (lower score). The proxy version of the SSQOL-DK appears to be reliable for use with stroke patients up to a few years following a stroke.

Quality of life in survivors after cervical artery dissection

Little data exists about longterm outcome, quality of life (QOL) and its predictors after spontaneous cervical artery dissections (sCAD). Clinical and radiological data of 114 patients with sCAD were collected prospectively. Six patients died within 3 months, the remaining 108 were contacted after a mean of 1498 days (range: 379-3455), 99 survivors (92 %) replied. QOL, assessed with the stroke-specific QOL scale (SSQOL), and functional abilities, measured with modified Rankin Scale (mRS) were compared, and predictors of QOL were analyzed. Subgroup analyses were performed for patients with ischemic stroke, those with isolated local symptoms or transient ischemic symptoms and those without significant disabilities (mRS 0-1) at follow-up. Seventy-one of 99 patients (72 %) had no significant disability, but only 53 (54 %) reported a good QOL (SS-QOL > or = 4). Compared to the self-rated premorbid QOL of all patients, SS-QOL was impaired after sCAD (p < 0.001); impairment of QOL was observed in patients with ischemic stroke (p < 0.001), in patients with isolated local or transient ischemic symptoms (p < 0.038) and those without significant disabilities at follow-up (p = 0.013). Nevertheless, low mRS was associated with better overall QOL (Kendall's tau > 0.5). High National Institute of Health Stroke Scale score on admission and higher age were independent predictors of impaired QOL (p < 0.05). QOL is impaired in almost half of long-term survivors after sCAD, even in patients with local or transient symptoms or without functional disability. Impairment of QOL is a surprisingly frequent long-term sequela after sCAD and deserves attention as an outcome measure in these patients.

Health-related quality of life after stroke: what are we measuring?

As there is no single, accepted definition of health-related quality of life (HRQOL), it is assumed to be a broad, multidimensional construct referring to those aspects of people's lives that reasonably relate to their health. Although many scales are used to assess HRQOL, the operationalization of this construct within each tool is unclear. To clarify what each tool is measuring, this study reviewed eight scales commonly used to evaluate HRQOL after stroke. Two reviewers classified scale items from five generic and three stroke-specific scales within an established framework with nine dimensions; physical functioning, symptoms, global judgments of health, psychological well-being, social well-being, cognitive functioning, role activities, personal constructs, and satisfaction with care. All scales reviewed provide multidimensional assessment, but vary in number and combination of dimensions. All include assessment of physical functioning and most incorporate concepts, such as psychological well-being, social well-being, and role activities. One generic (Sickness Impact Profile) and two stroke-specific scales (Stroke Impact Scale and Stroke-Specific Quality of Life Scale) seemed most comprehensive. Evaluated against a common framework of dimensions, scales commonly used in the assessment of HRQOL after stroke provide varying multidimensional assessments of aspects of life function related to health. Whether any of these assessments are sufficient to describe HRQOL in its entirety is unclear.

Propriedades psicométricas da versão brasileira da escala de qualidade de vida específica para acidente vascular encefálico: aplicação do modelo Rasch

BACKGROUND: Stroke results in important deficits, which reduce individuals’ quality of life (QOL). Specific QOL measurements are necessary to understand and quantify the impact of this pathological condition. OBJECTIVE: The aim of this study was to make a transcultural adaptation of the Stroke Specific Quality of Life Scale (SSQOL) into Brazilian Portuguese and to assess its psychometric properties. METHODS: The SSQOL was translated and adapted in accordance with standardized procedures and was subjected to test-retest reliability analysis with 10 hemiplegic subjects. The psychometric properties were investigated using Rasch analysis on 50 hemiplegics. RESULTS: Reliability coefficients of 0.92 were found for items and subjects. The separation index for the hemiplegics was 3.34, while, for the items, it was 3.36. These results indicated that the items separated the subjects into at least three levels of QOL: Low, medium, and high. Of the 49 items, four did not fit into the model, which partially invalidated the construct validity of the instrument, although the erratic patterns of these items could also be explained in the present sample. CONCLUSIONS: The instrument was shown to be clinically useful for the assessed population and other studies in populations with other characteristics are now underway.

Validación de la escala de calidad de vida para el ictus (ECVI-38)

The stroke-specific quality of life scale (ECVI-38) is the first Spanish-language instrument for evaluating the quality of life in individuals who have survived a stroke. To evaluate the psychometric properties of the third version of the ECVI-38. A total of 243 stroke survivors were interviewed 2 months-2 years after the event; 61 of them were surveyed again 7-14 days later and 74 others were interviewed on beginning and ending a two-month period of rehabilitation. Gold standard methods for this type of research were used to evaluate the psychometric properties (acceptability, reliability, validity and sensitivity to change). RESULTS. The ECVI was acceptable, with means close to the medians, a high degree of variability of the sample and a ceiling/floor effect below 20%, except for the odd exception. It displayed good reliability with internal consistence, with a Cronbach's alpha value of between 0.79 and 0.95, and a test-retest with intraclass correlation coefficients between 0.81 and 0.96. It satisfied the validity criteria both in analyses within the scale and in analyses against external criteria: it distinguishes well between different degrees of neurological, emotional and cognitive compromise. Sensitivity to change, at eight weeks after rehabilitation, was between moderate and high in most domains: there were significant differences between the scores for the domains, and the size of the effect was above 0.5. The ECVI-38 is acceptable, valid and reliable for evaluating the spectrum of consequences and recovery from a stroke, and its result changes in proportion to recovery.

Validation of the Stroke Specific Quality of Life Scale (SS-QOL): test of reliability and validity of the Danish version (SS-QOL-DK)

Objective: To test the reliability and validity of the Danish version of the Stroke Specific Quality of Life Scale version 2.0 (SS-QOL-DK), an instrument for evaluation of health-related quality of life. Design: A correlational study. Setting: A stroke unit that provides acute care and rehabilitation for stroke patients in Frederiksborg County, Denmark. Subjects: One hundred and fifty-two stroke survivors participated; 24 of these performed test—retest. Intervention: Questionnaires were sent out and returned by mail. A subsequent telephone interview assessed functional level and missing items. Main outcome measures : Test—retest was measured using Spearman's r, internal consistency was estimated using Cronbach's alpha, and evaluation of floor and ceiling values in proportion of minimum and maximum scores. Construct validity was assessed by comparing patients' scores on the SS-QOL-DK with those obtained by other test methods: Beck's Depression Index, the General Health Survey Short Form 36 (SF-36), the Barthel Index and the National Institutes of Health Stroke Scale, evaluating shared variance using coefficient of determination, r 2. Comparing groups with known scores assessed known-group validity. Convergent and discriminant validity were assessed. Results: Test—retest of SS-QOL-DK showed excellent stability, Spearman's r = 0.65—0.99. Internal consistency for all domains showed Cronbach's α = 0.81—0.94. Missing items rate was 1.0%. Most SS-QOL-DK domains showed moderately shared variance with similar domains of other test methods, r 2 = 0.03—0.62. Groups with known differences showed statistically significant difference in scores. Item-to-scale correlation coefficients of 0.37—0.88 supported convergent validity. Conclusions: SS-QOL-DK is a reliable and valid instrument for measuring self-reported health-related quality of life on group level among people with mild to moderate stroke.

Validity of the SS-QOL in Germany and in Survivors of Hemorrhagic or Ischemic Stroke

Objective. The Stroke-Specific Quality of Life Scale (SS-QOL) is a recently developed measure to assess health-related quality of life in stroke patients. The objective of this study was to translate the American version of the SS-QOL and examine the validity of the German proxy version, in both ischemic and hemorrhagic stroke survivors. Methods. The translation was conducted according to published guidelines. The validation was performed in consecutive adult stroke survivors. Data were obtained 1 year after discharge. To examine the dimensionality of the SS-QOL, factor analyses were conducted. The validity was examined by the associations of the subscales with the Functional Independence Measure and Short Form 36. Results. The literal translation revealed no major changes between the American and the German versions of the SS-QOL. Three hundred seven stroke survivors were included in the study. Unlike the 1st validation study, most of the variance could be explained by 8 instead of 12 factors; therefore, the 8-factor solution was further examined. The validity of the SS-QOL total score and “observable” scales such as “activities” was shown. Conclusions. For the German proxy version of the SS-QOL, an 8-factor solution was found to be the most appropriate. The psychometric properties of these 8 subscales were good or excellent with respect to internal consistency. The validity of the total score was shown, but some subscales (energy, mood, and thinking) failed the hypothesized associations. Therefore, the SS-QOL needs to be further explored in other settings and populations.

The Value of Quality of Life Research in Stroke

See related article, pages 2081–2085. This issue of Stroke contains an excellent article by Williams et al that deals with an important area of outcomes research: health-related quality of life (HRQOL).1 Williams and colleagues have previously created and validated the Stroke Specific Quality of Life scale (SSQOL),2 which is now being used as a secondary outcome measure in many ongoing stroke clinical trials. In this article, they measure the validity of obtaining the SSQOL from a family proxy. For many among the readership of Stroke , outcomes research may not be as stimulating as other topics, such as the results of clinical trials or epidemiological studies. Most who pick up this issue will not (or did not) immediately focus on the Williams article and read it first. And yet, research with regard to outcomes such as HRQOL is of increasing importance, especially for clinical trialists. Stroke clinical trials in general have used “crude” ordinal scales such as the modified Rankin (mRS) to measure functional poststroke outcomes. The mRS is clinically meaningful in that …

Early cognitive impairment predicts long-term depressive symptoms and quality of life after stroke

Objective The aim of the present study was to examine the predictive value of cognitive impairment in the acute phase after stroke as a risk factor for long-term (six to ten months after stroke) depressive symptoms (DS) and a reduced quality of life (QOL), independent of demographic and neurological predictors. Methods We evaluated 143 patients within the first 3 weeks post-stroke. Predictor variables included domain-specific cognitive function, demographic data, vascular risk factors, lesion characteristics, and clinical factors. Predictor variables associated with long-term DS (Montgomery ?sberg Depression Rating Scale ≥ 7) and QOL (Stroke-Specific Quality of Life Scale) were identified with multiple logistic and linear regression. Results Long-term DS were independently predicted by cognitive impairment at baseline, DS at baseline, female sex, diabetes mellitus, and previous TIA(s). Cognitive impairment, increasing age, and functional dependence predicted a reduced QOL, whereas hypercholesterolaemia predicted a better QOL. Among all cognitive disorders, unilateral neglect was the greatest risk factor for DS after 6 months, whereas a disorder in visual perception and construction affected QOL the most. Conclusions Cognitive impairment and vascular risk factors are important predictors of long-term DS and QOL after stroke. The prognostic value of cognition suggests a reactive component in the development or continuation of long-term DS.

Stroke Specific Quality of Life Scale: Danish adaptation and a pilot study for testing psychometric properties

Stroke has an effect on many aspects of quality of life (QoL) and therefore it is important to measure the magnitude of the impact. Items in the American version of the Stroke Specific Quality of Life (SS-QoL) Scale are developed with help from patients with stroke and include even language impairments. To translate and culturally adapt the American SS-QoL Scale, version 2.0, a stroke-specific instrument measuring health-related QoL, into a Danish version, and to perform a pilot testing of the psychometric properties of the instrument. The guidelines recommended by Guillemin et al. (J Clin Epidemiol, 46, 1993, 1417) were followed including two independent forward and one back translation, inclusion of laymen, here patients with stroke and their spouses, pretest, and examining selected items with a probing technique. Four couples were included in the pretest, 14 in the pilot study. The patients for pretest and pilot study were selected strategically with regard to interest for participation, experience as stroke survivors, sufficient capacity of language perception and cohabitant status. In the Danish version instructions were made more distinct and formal than in the original American version. Explanatory examples within the items were excluded. One new item adjusted for Danish conditions replaced one in the original version, and the response categories concerning personality were adjusted for cultural differences. The pilot study resulted in a more explicit formulation of the instructions to mark each item only once and on the same line as the item. A Danish version of SS-QoL version 2.0 has been developed and content as well as format has proved relevant and acceptable to patients with stroke including those with impaired language production. The next step is testing the psychometric properties of the instrument.

Measuring quality of life in people with aphasia: the Stroke Specific Quality of Life Scale.

Assessing health related quality of life (HRQOL) in people with communication disabilities is a challenge in health related research. Materials used to assess HRQOL are often linguistically complex and their mode of administration usually does not facilitate people with communication disabilities to give their experiences. We are currently running a medium scale study (80 participants) which aims to explore the HRQOL of people with long-term aphasia and to assess the psychometric properties and the acceptability of the Stroke Specific Quality of Life Scale (SS-QOL) (Williams et al. 1999) as a single measure for the assessment of HRQOL in this population. Here the initial stages of modifying the SS-QOL for use with people with aphasia will be presented. We will concentrate on the process of making the scale communicatively accessible to people with aphasia and increasing its content validity with this population group.

Reliability and telephone validity of the Stroke-specific Quality of Life (SS-QOL) scale

P3 Background/Purpose: The SS-QOL is a validated 49-item stroke-specific quality of life scale. Scale stability over time, between raters and with different administration modes are necessary for use in large studies. The purpose of this study is to examine SS-QOL test-retest (TR) and inter-rater reliability (IR), and validity of telephone (PH) administration. Methods: Ischemic stroke survivors with no significant language or cognitive impairments were recruited as part of an ongoing study of SS-QOL version 2.0. In the TR study (N=47), a trained interviewer re-administered the SS-QOL within 2 hours of the initial interview. In the IR study (N=24), a second trained interviewer re-administered the SS-QOL within 2 hours of the first interview. The PH interview (N=34) was conducted within 48 hours of a face to face interview. Pearson correlations were used to assess the relationship between the overall SS-QOL scores and individual domain scores. Because scores may be highly correlated yet biased, paired t-tests were used to assess response bias. Overall SS-QOL score and domain scores range from 1.0 (worst) to 5.0 (best). Domains are: Mobility, Upper Extremities, Work, Self-care, Energy, Family Roles, Vision, Language, Social Roles, Cognition, Personality, and Mood. Results: 98–100% of the 3 samples were male, 88–94% were white and mean age was 66–67 years. Mean time since stroke was 4 months in the TR and IR samples and 5 months in the PH sample. SS-QOL scores were highly correlated and unbiased on TR (r=.92), IR (r=.92), and PH (r=.93) testing. All individual domain scores were also highly correlated in IR, TR and PH testing. Cognition and Personality domain scores were slightly higher on re-test and the Language domain score was slightly higher on PH administration. These differences were all &lt; 1/4 of a standard deviation in domain score. Conclusions: The SS-QOL has excellent test-retest and inter-rater reliability. Telephone administration of the SS-QOL is accurate and unbiased. Individual domain scores are also highly reliable and observed differences in domain scores are rare and small. Validation of SS-QOL mail administration is ongoing.

Reliability and telephone validity of the Stroke-specific Quality of Life (SS-QOL) scale

P3 Background/Purpose: The SS-QOL is a validated 49-item stroke-specific quality of life scale. Scale stability over time, between raters and with different administration modes are necessary for use in large studies. The purpose of this study is to examine SS-QOL test-retest (TR) and inter-rater reliability (IR), and validity of telephone (PH) administration. Methods: Ischemic stroke survivors with no significant language or cognitive impairments were recruited as part of an ongoing study of SS-QOL version 2.0. In the TR study (N=47), a trained interviewer re-administered the SS-QOL within 2 hours of the initial interview. In the IR study (N=24), a second trained interviewer re-administered the SS-QOL within 2 hours of the first interview. The PH interview (N=34) was conducted within 48 hours of a face to face interview. Pearson correlations were used to assess the relationship between the overall SS-QOL scores and individual domain scores. Because scores may be highly correlated yet biased, paired t-tests were used to assess response bias. Overall SS-QOL score and domain scores range from 1.0 (worst) to 5.0 (best). Domains are: Mobility, Upper Extremities, Work, Self-care, Energy, Family Roles, Vision, Language, Social Roles, Cognition, Personality, and Mood. Results: 98–100% of the 3 samples were male, 88–94% were white and mean age was 66–67 years. Mean time since stroke was 4 months in the TR and IR samples and 5 months in the PH sample. SS-QOL scores were highly correlated and unbiased on TR (r=.92), IR (r=.92), and PH (r=.93) testing. All individual domain scores were also highly correlated in IR, TR and PH testing. Cognition and Personality domain scores were slightly higher on re-test and the Language domain score was slightly higher on PH administration. These differences were all Conclusions: The SS-QOL has excellent test-retest and inter-rater reliability. Telephone administration of the SS-QOL is accurate and unbiased. Individual domain scores are also highly reliable and observed differences in domain scores are rare and small. Validation of SS-QOL mail administration is ongoing.

Development of a stroke-specific quality of life scale.

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. 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. All 12 domains of the SS-QOL were unidimensional. In the final 49-item scale, all domains demonstrated excellent internal reliability (Cronbach's alpha values for each domain >/=0.73). Most domains were moderately correlated with similar domains of established outcome measures (r2 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). 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.