Stroke-Adapted Sickness Impact Profile Research Articles

Depression and quality of life after cerebral venous sinus thrombosis

Introduction Cerebral venous sinus thrombosis (CVST) is an important cause of stroke in young and has a favourable outcome. Long term sequelae of CVST include motor disability, cognitive impairment, depression, anxiety, fatigue, impaired employment and poor quality of life. Objective To evaluate depression and quality of life after CVST. Methodology Patients were recruited from our CVST cohort who completed at least one year after discharge. Quality of life was assessed using Stroke-Adapted Sickness Impact Profile (SA-SIP 30) and Hamilton Depression scale (HAM-D). Results One hundred patients (60 men, 40 women) were included in the study. Their age ranged from 14 to 60 years (34.97 ± 10.06). The interval from discharge to assessment of quality of life was 2.2 ± 1.6 years. Ninety-eight percent of patients had good modified Rankin score at follow-up. SA-SIP 30 did not reveal any functional disability for physical functioning. Seven had impairment for psychosocial domain despite having good modified Rankin scores. Thirty patients had depression. Patients with higher mRS at discharge had increased presence of depression. Quality of life scores did not correlate with presence of seizure, headache, infarction and sinuses involved. Conclusion This is the first Indian study demonstrating depression in patients with CVST and use of SA-SIP to assess quality of life in them. Occurrence of depression in CVST is as high as in arterial strokes.

Cognition and quality of life in patients with poststroke epilepsy: A case–control study

IntroductionThough seizures are a common complication after stroke, only little scientific evidence is available about the impact of epilepsy on cognitive functioning and quality of life in patients who have had a stroke. Therefore, we assessed these items in a case–control study. MethodsWe studied 36 patients with poststroke epilepsy (PSE) and 36 matched patients who have had a stroke without epilepsy using parts of the FePsy (the computerized visual searching task (CVST) for central information processing speed and a reaction time test), the mini-mental-state examination (MMSE), the EuroQol, the stroke-adapted Sickness Impact Profile questionnaire (SA-SIP-30), the Barthel index, the modified Rankin scale, and the National Institutes of Health stroke scale (NIHSS). ResultsPatients with PSE had significantly lower scores on the CVST and MMSE. Generic quality of life was the same in patients with poststroke epilepsy and patients with stroke only, however, the SA-SIP-30 showed a lower disease-specific quality of life in patients with poststroke epilepsy. The Barthel index showed no difference between both groups, but both the modified Rankin scale and the NIHSS were significantly higher in patients with poststroke epilepsy, indicating more disability and neurological impairment in patients with PSE. ConclusionsWe found that PSE relates to impaired cognitive functioning, a lower disease-specific quality of life and more disability and neurological impairment. This underlines the importance of further clinical research in this field.This article is part of the Special Issue “Seizures & Stroke”

Depression and Quality of Life after Cerebral Venous Sinus Thrombosis.

Introduction:Cerebral venous sinus thrombosis (CVST) is an important cause of stroke in young and has a favorable outcome. Long-term sequelae of CVST include motor disability, cognitive impairment, depression, anxiety, fatigue, impaired employment and poor quality of life.Objective:To evaluate depression and quality of life after CVST.Methods:Patients who completed at least 1 year after discharge were recruited for this cross-sectional observational study from our CVST cohort. Quality of life was assessed using Stroke-Adapted Sickness Impact Profile (SA-SIP 30) and depression using Hamilton Depression scale (HAM-D).Results:A total of 100 patients (60 men and 40 women) were included in the study. Their age ranged from 14 to 60 years (34.97 ± 10.06). The interval from discharge to assessment of quality of life was 2.2 ± 1.6 years. In all, 98% of patients had good modified Rankin score at follow-up. SA-SIP 30 did not reveal any functional disability for physical functioning. Seven had impairment for psychosocial domain despite having good modified Rankin scores. Thirty patients had depression. Patients with higher mRS at discharge had increased presence of depression. Quality-of-life scores did not correlate with presence of seizure, headache, infarction and sinuses involved.Conclusion:This is the first Indian study demonstrating depression in patients with CVST and use of SA-SIP to assess quality of life in them. Occurrence of depression in CVST is as high as in arterial strokes.

Cognitive and Graded Activity Training Can Alleviate Persistent Fatigue After Stroke

Fatigue is a common, persistent consequence of stroke, and no evidence-based treatments are currently available to alleviate fatigue. A new treatment combining cognitive therapy (CO) with graded activity training (GRAT), called COGRAT, was developed to alleviate fatigue and fatigue-related symptoms. This study compared the effectiveness of the COGRAT intervention with a CO-only intervention after a 3-month qualification period without intervention. This randomized, controlled, assessor-blind clinical trial was conducted in 8 rehabilitation centers. Eighty-three stroke patients (>4 months after stroke) were randomly assigned to 12 weeks of CO or COGRAT after qualification. Seventy-three patients completed treatment and 68 were available at follow-up. Primary outcomes (Checklist Individual Strength-subscale Fatigue (CIS-f); self-observation list-fatigue (SOL-f)) and secondary outcomes (Hospital Anxiety and Depression Scale, Stroke-Adapted Sickness Impact Profile, SOL-pain, SOL-sleep-D, 6-minute walk test) were collected at baseline (before and after qualification period) and after treatment (immediate and 6-month follow-up). The qualification period showed stable outcome measures. Both treatments showed significant beneficial effects on fatigue (CIS-f: η(p)(2)=0.48, P<0.001) and other outcomes (except pain and anxiety) with intention-to-treat analyses. Gains for the COGRAT group exceeded those in the CO group on number of individuals showing clinical improvement on the CIS-f (≥8 points: 58% versus 24%) and on physical endurance (η(p)(2)=0.20, P<0.001). A 12-week cognitive therapy program can alleviate persistent fatigue after stroke. The best results are obtained when cognitive therapy is augmented with graded activity training. Clinical Trial Registration- URL: http://www.trialregister.nl. Unique identifier: NTR2704.

Relationship Between Disability and Health-Related Quality of Life and Caregiver Burden in Patients With Upper Limb Poststroke Spasticity

To evaluate the relationship between disability and both health-related quality of life (HRQoL) and caregiver burden in patients with upper limb poststroke spasticity. Multicenter open-label study. Thirty-five sites in North America. Patients (N = 279) with upper limb poststroke spasticity. Post hoc analyses of data from an open-label study were performed to estimate HRQoL and caregiver burden at study baseline across levels of disability in 4 problem domains: hygiene, dressing, limb posture, and pain. Disability severity in these areas was determined by using the 4-point Disability Assessment Scale rated by the physicians. HRQoL measured by the patient-reported EuroQol 5 Dimensions questionnaire and the Stroke-Adapted Sickness Impact Profile and caregiver burden. At study baseline, increasing disability in the hygiene, dressing, and pain domains of the Disability Assessment Scale was associated with diminishing HRQoL scores (P < .002) measured by the EuroQol 5 Dimensions. By using the Stroke-Adapted Sickness Impact Profile, greater disability scores in all problem domains were significantly associated with higher overall dysfunction scores (P ≤ .05). Within the physical dimension of the Stroke-Adapted Sickness Impact Profile, significant associations also were observed in all domains. At baseline, caregiver burden was significantly related to increasing levels of hygiene and dressing domain severity (P ≤ .05). Caregiver assistance requirement increased from approximately 9.0-28.2 hours per week in the hygiene domain and 3.3-32.1 hours per week in the dressing domain as disability increased from "none" to "severe." In patients with upper limb poststroke spasticity, increasing disability in the hygiene, dressing, and pain domains of the Disability Assessment Scale were associated with diminishing HRQoL. Furthermore, these patients required caregiver assistance proportionally related to the severity of their disability in the hygiene and dressing domains.

The predictive value of cognitive impairments measured at the start of clinical rehabilitation for health status 1 year and 3 years poststroke

The objective of this study was to investigate the value of screening for cognitive functions at the start of an inpatient rehabilitation programme to predict the health status 1 and 3 years poststroke. In this longitudinal cohort study of stroke patients in inpatient rehabilitation data of 134 participants were analysed. Cognitive and clinical data were collected after admission to inpatient rehabilitation treatment. Data on health status were collected at 1 and 3 years post stroke. Cognitive functioning was assessed with the Cambridge Cognitive Examination (CAMCOG). Health status was assessed with the Stroke-Adapted Sickness Impact Profile. Statistical analyses included descriptive statistics, Pearson correlations and multiple regression analysis. One year poststroke, the CAMCOG dimensions of orientation (β=-0.21), Perception (β=-0.16) and Memory (β=-0.16), as well as age and motor function were significant predictors of health status. Cognitive variables alone explained 2.5-10.3% of the variance. Three years poststroke, CAMCOG Perception (β=-0.19 and -0.18) and Language (β=-0.15), as well as age, type of stroke and motor function were significant predictors of health status, and the cognitive variables alone explained 1.7-10.9% of the variance. CAMCOG scores were significant predictors of long-term health status in patients with stroke, although the amount of explained variance was small.

Coping styles in relation to cognitive rehabilitation and quality of life after brain injury

This study investigated the changes in coping styles of patients with acquired brain injury who underwent cognitive rehabilitation, and the effects of these changes on their quality of life. Participants were 110 patients in the chronic phase post-injury, who underwent outpatient cognitive rehabilitation according to current guidelines and standards. Coping style (Utrecht Coping List) was measured at the start of rehabilitation (T0) and repeated at least 5 months later (T1). Coping style was related to quality of life measured at T1 (Life Satisfaction Questionnaire and Stroke-Adapted Sickness Impact Profile). Results indicated that active problem-focused coping styles decreased and passive emotion-focused coping styles increased significantly between T0 and T1. Furthermore, the study showed that increases in active problem-focused coping styles and decreases in passive emotion-focused coping styles predicted a higher quality of life in the long term. These changes in coping styles are adaptive for the adjustment process in the chronic phase post-injury. Overall however, most participants showed maladaptive changes in coping styles. Implications for cognitive rehabilitation are therefore discussed.

Exploring the feasibility and efficacy of a telehealth stroke self-management programme: a pilot study.

Moving On after STroke (MOST) is an established self-management programme for persons with stroke and their care partners. Through 18 sessions over 9 weeks, each including discussion and exercise, participants learn about goal-setting, problem-solving, exercise, and community-reintegration skills. This study was undertaken to evaluate the feasibility and efficacy of telehealth delivery of MOST. Efficacy was evaluated using an experimental non-randomized trial comparing a telehealth MOST intervention group (T-MOST) (n = 10) with a waiting list control group (WLC) (n = 8). Outcome measures included the Berg Balance Scale (BBS), the Reintegration to Normal Living Index, the Stroke-Adapted Sickness Impact Profile, Goal Attainment Scaling, and the Geriatric Depression Scale. The feasibility evaluation included attendance rates, focus groups, and facilitator logs. In MOST Telehealth, one co-facilitator was local and the other was connected by videoconference. Attendance rates for persons with stroke (83.9%, SD = 2.6) and care partners (76.7%, SD = 2.9) and participant and facilitator experiences indicated feasibility of this mode of programme delivery. There was a significant difference in BBS scores between the T-MOST group and the WLC group (mean difference -4.27, 95%CI: -6.66 to -1.87). Participants reported additional benefits, including increased motivation and awareness of partners' needs. Videoconferencing was reported to decrease their sense of isolation. It appears feasible to deliver the MOST programme with two facilitators, one connected by videoconference and one in person. In addition, preliminary evidence suggests that the programme is associated with improved well-being in persons with stroke and their care partners. Practitioners delivering self-management programmes may consider wider dissemination using videoconferencing.

Repeated Treatments With Botulinum Toxin Type A Produce Sustained Decreases in the Limitations Associated With Focal Upper-Limb Poststroke Spasticity for Caregivers and Patients

Elovic EP, Brashear A, Kaelin D, Liu J, Millis SR, Barron R, Turkel C. Repeated treatments with botulinum toxin type A produce sustained decreases in the limitations associated with focal upper-limb poststroke spasticity for caregivers and patients. Objective To assess the safety and evaluate the effects of repeated treatments with botulinum toxin type A (BTX-A) on functional disability, quality of life (QOL), and muscle tone of patients with upper-limb poststroke spasticity, as well as its effect on caregivers. Design Multicenter, open-label, repeated-dose study. Setting Thirty-five clinical sites in North America. Participants Patients (N=279) with upper-limb poststroke spasticity at 6 months or more poststroke. Intervention Up to 5 intramuscular injections of BTX-A (200–400U) divided among the wrist, finger, thumb, and elbow flexors, with at least 200U in the wrist and finger flexors. Retreatment was permitted at 12 weeks or more after the last treatment. Main Outcome Measures Investigators rated disability using the Disability Assessment Scale and muscle tone using the Ashworth Scale. Each patient's health-related QOL was assessed by using the Stroke Adapted Sickness Impact Profile and the visual analog scale of the European Quality of Life−5 Dimensions questionnaires. Results Patients treated with BTX-A reported improvements in muscle tone, disability, and ability to function that were statistically significant and clinically meaningful. Significant improvements were observed at week 30 and at subsequent time points in QOL in the overall group and the high-dose group. Conclusions Up to 5 treatments with BTX-A every 12 weeks for up to 56 weeks in patients with poststroke spasticity was well tolerated and significantly improved muscle tone, lessened disability, and improved patients' QOL. Further research is required to examine the effectiveness of repeated injections of BTX-A in patients with poststroke spasticity.

Effect of a Home Leisure Education Program After Stroke: A Randomized Controlled Trial

Desrosiers J, Noreau L, Rochette A, Carbonneau H, Fontaine L, Viscogliosi C, Bravo G. Effect of a home leisure education program after stroke: a randomized controlled trial. Objective To evaluate the effect of a leisure education program on participation in and satisfaction with leisure activities (leisure-related outcomes), and well-being, depressive symptoms, and quality of life (primary outcomes) after stroke. Design Randomized controlled trial. Setting Home and community. Participants Sixty-two people with stroke. Intervention Experimental participants (n=33) received the leisure education program at home once a week for 8 to 12 weeks. Control participants (n=29) were visited at home at a similar frequency. Participants were evaluated before and after the program by a blinded assessor. Main Outcome Measures Change from preintervention to postintervention in: minutes of leisure activity per day, number of leisure activities, the Leisure Satisfaction Scale, the Individualized Leisure Profile, the General Well-Being Schedule (GWBS), the Center for Epidemiological Studies Depression Scale, and the Stroke-Adapted Sickness Impact Profile (SA-SIP30). Results There was a statistically significant difference in change scores between the groups for satisfaction with leisure with a mean difference of 11.9 points (95% confidence interval [CI], 4.2−19.5) and participation in active leisure with a mean difference of 14.0 minutes (95% CI, 3.2−24.9). There was also a statistically significant difference between groups for improvement in depressive symptoms with a mean difference of −7.2 (95% CI, −12.5 to −1.9). Differences between groups were not statistically significant on the SA-SIP30 (0.2; 95% CI, −1.3 to 1.8) and GWBS (2.2; 95% CI, −5.6 to 10.0). Conclusions The results indicate the effectiveness of the leisure education program for improving participation in leisure activities, improving satisfaction with leisure and reducing depression in people with stroke.

Comparing contents of functional outcome measures in stroke rehabilitation using the International Classification of Functioning, Disability and Health

Purpose. To examine the content of outcome measures that are frequently used in stroke rehabilitation and focus on activities and participation, by linking them to the International Classification of Functioning, Disability and Health (ICF).Method. Constructs of the following instruments were linked to the ICF: Barthel Index, Berg Balance Scale, Chedoke McMaster Stroke Assessment Scale, Euroqol-5D, Functional Independence Measure, Frenchay Activities Index, Nottingham Health Profile, Rankin Scale, Rivermead Motor Assessment, Rivermead Mobility Index, Stroke Adapted Sickness Impact Profile 30, Medical Outcomes Study Short Form 36, Stroke Impact Scale, Stroke Specific Quality of Life Scale and Timed Up and Go test.Results. It proved possible to link most constructs to the ICF. Most constructs fitted into the activities and participation component, with mobility being the category most frequently covered in the instruments. Although instruments were selected on the basis of their focus on activities and participation, 27% of the constructs addressed categories of body functions. Approximately 10% of the constructs could not be linked.Conclusions. The ICF is a useful tool to examine and compare contents of instruments in stroke rehabilitation. This content comparison should enable clinicians and researchers to choose the measure that best matches the area of their interest.

The Impact of Mild Stroke on Meaningful Activity and Life Satisfaction

Patients with mild stroke are assumed to achieve full recovery with little or no intervention. However, recent studies suggest that such patients may experience persistent disability and difficulty with complex activities. We prospectively assessed the impact of mild stroke (National Institutes of Health Stroke Scale [NIHSS] score </= 5) with standard assessments of function, health-related well-being, activity participation, and stroke-specific quality of life. Of 771 patients admitted over 12 months, 377 had an NIHSS score of </= 5; of these, 244 met additional inclusion criteria, and 219 were assessed 6 months after stroke onset. Despite full independence in basic activities of daily living, many patients (87%) reported residual stroke-related changes. On average, 7 (standard deviation [SD] = 6.21) stroke-related problems (SD = 6.21) were reported on the Stroke-Adapted Sickness Impact Profile (SA-SIP). Changes in work, driving, and recreational activities were reported. Motor impairment as measured by the NIHSS or the Functional Independence Measure (FIM) motor subscale did not influence scores on outcome measures. Regression analysis predicting life satisfaction (R2 = .62) was computed. Our results indicated that SA-SIP score, emotional well-being, and activity participation were significant, but age, race, sex, NIHSS score, and FIM motor and cognitive scores were not significant. In our sample, the determinants of life satisfaction after mild stroke differed from those reported after more severe stroke. Given the mild motor impairments in our sample, other, more subtle consequences of stroke, such as depression, impaired executive function or attention, or other neurologic impairments, may play more important roles in life satisfaction.

Responsiveness of functional health status measures frequently used in stroke research

Purpose. To compare the responsiveness of several functional health status measures frequently used in stroke research, namely the Barthel Index (BI), Functional Independence Measure (FIM), Frenchay Activities Index (FAI) and Stroke-Adapted Sickness Impact Profile 30 (SA-SIP 30).Method. Patients with a first-ever supratentorial stroke admitted for inpatient rehabilitation were included. Complete datasets for 163 patients were available for analysis. Floor/ceiling effects and responsiveness, quantified by effect sizes, were studied for the periods between rehabilitation admission and six months post stroke (subacute phase) and between six and 12 months post stroke (chronic phase).Results. Effect sizes in the subacute phase were similar and were classified as large for the BI, FIM total and FIM motor score. The FIM cognitive score showed a considerable ceiling effect and had the smallest effect size in the subacute phase. In the chronic phase, the FAI and SA-SIP 30 detected the most changes and had moderate effect sizes.Conclusions. BI, FIM total and FIM motor score, FAI and SA-SIP 30 were responsive measures. We recommend the use of the BI in the subacute phase and the use of the FAI and SA-SIP 30 in the chronic phase, especially for the stroke rehabilitation population.

Poster 249: Health Utility and Quality of Life Following Botulinum Toxin Type A in Repeated Doses for the Treatment of Focal Upper-Limb Spasticity in Stroke Patients: A Multicenter Open-Label Study

Objective: To measure the effects of repeated intramuscular botulinum toxin type A (BTX-A) for focal upper-limb spasticity of stroke patients on health utility and quality of life. Design: Multicenter, open-label, repeated-dose study. Setting: 35 North-American stroke research centers. Participants: 279 stroke patients. Intervention: Up to 5 intramuscular BTX-A (100–600U) injections given to wrist, finger, and elbow flexors. Main Outcome Measures: The Stroke-Adapted Sickness Impact Profile (SIP-SA; score range, 0 [no dysfunction] to 100 [maximum dysfunction]) and the EuroQol (EQ-5D) visual analog score (VAS; score range, 0 [worst imaginable health] to 100 [best imaginable health]) were evaluated at baseline, and weeks 6, 12, 24, 30, 36, and 48 after first intervention.

Clinical meaning of the Stroke-Adapted Sickness Impact Profile-30 and the Sickness Impact Profile-136.

Handicap or health-related quality of life (HRQL) measures are seldom used in stroke trials, although the importance of these measures has been stressed frequently. We studied the clinical meaning of the Stroke-Adapted Sickness Impact Profile-30 (SA-SIP30) and the original SIP136 for use in stroke research. We included 418 patients who had had a stroke 6 months earlier. We studied the associations between the SA-SIP30 and SIP136 scores versus other frequently used outcome measures from the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (Barthel Index, Rankin Scale) and the HRQL model (health perception items, Euroqol). To interpret the continuous SA-SIP30 and SIP136 scores, we used receiver operating characteristic curve analysis with the aforementioned measures as external criteria. The psychosocial dimension scores of both SIP versions remained largely unexplained. The physical dimension and total scores of both SIP versions were mainly associated with the disability measures derived from the ICIDH model, as well as with the physical HRQL domains. Most patients with an SA-SIP30 total score >33 or an SIP136 total score >22 had poor health profiles. There were no major differences between the SA-SIP30 and the SIP136, although the SA-SIP30 scores were less skewed toward the healthier outcomes than the SIP136. Our study showed that (1) both SIP total scores primarily represent aspects of physical functioning and not HRQL; (2) both SIP versions provide more clinical information than the frequently used disability measures; and (3) the SA-SIP30 should be preferred over the SIP136.

Evaluation of measures used to assess quality of life after stroke.

Assessment of quality of life (QOL) after stroke is becoming common with the recognition that evaluation of treatment should include quality as well as quantity of survival. This article will outline the main conceptual and methodological issues in QOL assessment, highlight advantages and disadvantages of measures used in stroke QOL research, and discuss some unresolved issues. We undertook a MEDLINE search using the keywords "stroke" and "quality of life" and reviewed 3 key texts on QOL measurement in stroke. Fifteen generic and 10 condition-specific measures used to assess QOL in stroke were identified and evaluated with the following criteria: reliability, validity, responsiveness, precision, acceptability, suitability for proxy respondents, mode of administration, and use of patient-centered approaches in development. Domains covered and level of comprehensiveness varied widely between generic and stroke-specific measures. No stroke-specific instruments used patient-centered approaches in their development. Four stroke-specific measures (Frenchay Activities Index, Niemi QOL scale, Ferrans and Powers QOL Index-Stroke Version, and Stroke-Adapted Sickness Impact Profile [SA-SIP30]) provided evidence of reliability and validity. The need remains for a patient-centered, psychometrically robust, stroke-specific QOL measure. Patients should be involved in each stage of instrument development. Caution is needed in the selection of an instrument to measure QOL after stroke. Although the Ferrans and Powers QOL Index-Stroke Version, Niemi QOL scale, SA-SIP30, and Sickness Impact Profile come closest to satisfying many of the criteria outlined in this article, the selection of any individual instrument depends on the specific goals and constraints of a particular study.