Validation of the Japanese-translated version Multiple Sclerosis Quality of Life-54 instrument]

The Multiple Sclerosis Quality of Life-54 instrument (MSQOL-54) is a specific quality of life (QOL) scale in English for multiple sclerosis (MS). It is composed of 54 items, and is a combination of the 36-item short form health survey (SF-36) and 18 disease-specific questions, such as fatigue, mental sexual and cognitive dysfunction. We developed the Japanese-translated version of MSQOL-54. The SF-36 has been previously validated and published in Japanese; therefore the translation work was performed mainly on the 18 MS specific items. The Japanese-translated version MSQOL-54 was examined in 62 Japanese patients with MS. The mean age of the patients was 42.8 years; mean expanded disability status scale (EDSS) score was 3.0. The ratio of respondents was almost complete for all scales except for those within the sexual scales. Internal consistency reliability estimates for the 11 multi-item scales ranged from 0.65 to 0.93 in 62 patients. Test-retest intraclass correlation coefficients ranged from 0.61 to 0.95 in 20 patients. Compared to the previous reported mean scores of general Japanese population of SF-36, the mean scores of patients with MS had lower scores in all scales. In comparison with an original article in English, the validation of the Japanese-translated version MSQOL-54 may be acceptable. There were no correlations between the results of the Japanese-translated version MSQOL-54 and EDSS except for physical function and physical health composite score. The Japanese-translated version of MSQOL-54 may provide unique information not readily evaluated by EDSS, and may be useful as clinical outcome measures in patients with MS.     

Factors influencing pre-stroke and post-stroke quality of life among stroke survivors in a lower middle-income country

Quality of life (QOL) reflects the individual’s perception of the position within living contexts. This study was done to describe pre- and post-stroke QOLs of stroke survivors. A prospective longitudinal study was done among stroke survivors admitted to 13 hospitals in the western province of Sri Lanka. The calculated sample size was 260. The pre-stroke and post-discharge one-month QOL was gathered using short form-36 (SF-36) QOL tool. SF-36 includes questions on eight domains: general health, physical functioning, pain, role limitation due to physical problems, social functioning, vitality, role limitations due to emotional problems, and mental health. Univariate analysis was followed by determining the independent risk factors through multivariate analysis. The response rate was 81%. The disability was measured by the modified Rankin scale which ranges from 0 (no symptoms) to 6 (fatal outcome). The median (IQR) disability score was 4 (3 to 5). The post-discharge QOL scores were significantly lower than pre-stroke values (p < 0.05). With a higher pre-stroke QOL, younger age was significantly associated in six domains and higher income and better health infrastructure in two domains (p < 0.05). Six factors were determined to be independent risk factors for lower post-discharge QOL scores of SF-36: younger age (for general health and role limitation-physical domains), female gender (for physical functioning and pain domains), lower health infrastructure (for general health, vitality, and mental health domains), lower education (for pain domain), higher disability (for general health, physical functioning, vitality, social functioning, and mental health domains), and hypercholesterolemia (for role limitation-emotional domain). Stroke survivors have not regained their pre-stroke QOL at 1 month following the hospital discharge irrespective of income level and pre-stroke QOL. Higher pre- and post-stroke QOLs are associated with better statuses of social determinants of health.     

The relationship between quality of life and clinical efficacy from a randomized trial comparing olanzapine and ziprasidone

OBJECTIVE: To examine treatment-specific changes in health-related quality of life (QOL) among patients with schizophrenia and to assess the association between clinical and QOL improvement. METHOD: This post hoc analysis used the findings of a 28-week, randomized, multicenter trial of patients with schizophrenia (DSM-IV) treated with olanzapine (10-20 mg/day) or ziprasidone (80-160 mg/day). Data were collected from August 2001 to December 2002. Efficacy was measured using the Positive and Negative Syndrome Scale (PANSS). Quality of life was assessed with the generic health self-administered Medical Outcomes Study Short-Form 36-Item Health Survey (SF-36) and the disease-specific expert-administered Heinrichs-Carpenter Quality of Life Scale (QLS). Mixed-effects-repeated-measures and last-observation-carried-forward approaches were used to assess the effects of treatment on QOL and the association of clinical outcomes to QOL outcomes. RESULTS: Olanzapine- and ziprasidone-treated patients demonstrated similar improvement from baseline to endpoint on the SF-36 and QLS. All correlations between changes in PANSS scores and the SF-36 were significant (p < .001), ranging from -0.159 to -0.400. All correlations between changes in PANSS scores and the QLS were significant (p < .0001), ranging from -0.286 to -0.603. The correlations between the 2 QOL measures were generally significant but small to moderate in magnitude. CONCLUSIONS: The results of this study indicate that, in patients with schizophrenia, olanzapine and ziprasidone treatment are associated with significant QOL and clinical improvements. Further, the significant correlation between change scores on the PANSS and QOL measures suggests that treatment-related clinical improvements are associated with improved health-related and disease-specific QOL. CLINICAL TRIALS REGISTRATION: ClinicalStudyResults.org identifier 2347.     

Assessment scales for the evaluation of stroke patients.

The approval of tissue plasminogen activator to treat acute ischemic stroke and the continuing need to evaluate new neuroprotective drugs and thrombolytic agents in clinical trials have focused interest on the quantitative evaluation of stroke patients. Emphasizing outcomes management in clinical practice has also heightened the importance of quantitative evaluation using assessment scales. Investigators who evaluate, revise, and use assessment scales for the measurement of stroke impairment, disabilites, and handicaps face many challenges. These problems include the heterogeneity of stroke and the need to determine appropriate outcome measures, to use neurological deficit scales that can accurately predict disability, to ensure adequate follow-up, and to use scales that can be used outside of clinical trials by all health care professionals. Such scales should be easily and quickly administered, responsive, valid, and reliable. The most important categories of stroke scales are neurological deficit scales (e.g., Canadian Neurological Scale, European Stroke Scale, and National Institutes of Health [NIH] Stroke Scale), functional outcome scales (e.g., Barthel Index), and global outcome scales (e.g., Modified Rankin Scale). Although stroke-specific, health-related quality-of-life (HRQL) scales have yet to be developed and validated, general HRQL scales such as the Nottingham Health Profile, the Medical Outcomes Study Short Form-36, the Sickness Impact Profile, and the Health Utilities Index may be used to assess stroke patients. Lacking the ideal single stroke outcome scale, we continue to recomend a combination of scales: the NIH Stroke Scale (or similar deficit scale), the Barthel Index, and the Rankin Scale.     

Randomized controlled trial of a comprehensive stroke education program for patients and caregivers

BACKGROUND AND PURPOSE: We report the findings of a randomized controlled trial to determine the effectiveness of a multidisciplinary Stroke Education Program (SEP) for patients and their informal carers. METHODS: Two hundred four patients admitted with acute stroke and their 176 informal carers were randomized to receive an invitation to the SEP or to receive conventional stroke unit care. The SEP consisted of one 1-hour small group educational session for inpatients followed by six 1-hour sessions after discharge. The primary outcome measure was patient- and carer-perceived health status (SF-36) at 6 months after stroke. Knowledge of stroke, satisfaction with services, emotional outcome, disability, and handicap and were secondary outcome measures. RESULTS: Only 51 of 108 (47%) surviving patients randomized to the SEP completed the program, as did 20 of 93 (22%) informal carers of surviving patients. Perceived health status (Short Form 36 [SF-36] health survey) scores were similar for SEP patients and controls. Informal carers in the control group scored better on the social functioning component of the SF-36 than the SEP group (P=0.04). Patients and informal carers in the SEP group scored higher on the stroke knowledge scale than controls (patients, P=0.02; carers, P=0. 01). Patients in the SEP group were more satisfied with the information that they had received about stroke (P=0.004). There were no differences in emotional or functional outcomes between groups. CONCLUSIONS: Although the SEP improved patient and informal carer knowledge about stroke and patient satisfaction with some components of stroke services, this was not associated with an improvement in their perceived health status. Indeed, the social functioning of informal carers randomized to the SEP was less than in the control group.     

The SF-36 in multiple sclerosis: why basic assumptions must be tested

OBJECTIVES: To evaluate, in people with multiple sclerosis, two psychometric assumptions that must be satisfied for valid use of the medical outcomes study 36-item short form health survey (SF-36): the data are of high quality and, it is legitimate to generate scores for eight scales and two summary measures using the standard algorithms. METHODS: SF-36 data from 438 people representing the full range of multiple sclerosis were examined (mean age 48; 70% women). Data quality (per cent missing data and computable scale and summary scores) were determined, six scaling criteria were tested to determine the legitimacy of generating the eight SF-36 scale scores using Likert's method of summed ratings, and two scaling criteria were tested to determine the appropriateness of the standard SF-36 algorithms for weighting scale scores to generate two summary measures. RESULTS: Data quality was excellent except in the most disabled subgroup where missing responses reached a maximum of 16.5% and summary scores could only be computed for 72%. There was clear support for the generation of SF-36 scale scores. Item response distributions were symmetric, item mean scores and variances were equivalent, corrected item-total correlations were high (range 0.46-0.85) and similar, and definite scaling success rates exceeded 96%. Nevertheless, there were notable floor or ceiling effects in four of the eight scales. Assumptions for generating two SF-36 summary measures were only partially satisfied. Although principal components analysis suggested a two component model, these components explained less than 60% of the total variance in SF-36 scales, and less than 75% of the variance in five of the eight scales. Moreover, scale to component correlations did not support the use of scale weights derived from United States population data. CONCLUSIONS: When using the SF-36 as a health measure in multiple sclerosis summary scores should be reported with caution.     

Timecourse of health-related quality of life as determined 3, 6 and 12 months after stroke. Relationship to neurological deficit,disability and depression

Objective: To study the timecourse of health-related global and domain-specific quality of life (QOL) in patients presenting with stroke or transient ischemic attacks (TIA) up to one year after the ischemic event. Variables were identified that may predict poststroke life satisfaction. Patients and Methods: In this prospective study, a cohort of 183 stroke/TIA patients was followed up at 3, 6, and 12 months. A total of 144 survivors completed the follow-up (65 women, 79 men, mean age 65.3 years). Health-related QOL was assessed by the Short Form 36 (SF-36) questionnaire, the neurological status by the European Stroke Scale (ESS). Disability was evaluated by using the Barthel index and the modified Swedish Stroke Registry Follow-up Form; depression was scored by the Montgomery-Asberg Depression Rating Scale (MADRS). Results: One year after stroke/TIA, 66 % of patients reported a worsening of life satisfaction compared with the prestroke level. The SF-36 physical component summary was reduced throughout the observation period. The SF-36 mental component summary deteriorated between the 6- and 12-months follow-up from 52.2 ± 7.1 to 50.6 ± 7.1 (p < 0.05). The SF-36 domains “physical functioning”, “social functioning” and the MADRS scores both showed a significant deterioration between 6 and 12 months poststroke (p < 0.05). In contrast, the neurological status and the degree of disability remained stable. Male sex, absence of diabetes, and normal MADRS scores at 3 and 6 months postinsult were identified as predictors of favorable QOL after 1 year (p < 0.05). Conclusions: Despite stable neurologic function and disability, global as well as domain-specific measures of QOL deteriorated over the 12-months observation period in a cohort of stroke survivors. Received: 18 September 2001, Received in revised form: 14 February 2002, Accepted: 20 February 2002     

Quality of life is favorable for most patients with multiple sclerosis: a population-based cohort study

BACKGROUND: Quality of life (QOL) is becoming an increasingly important factor in measurement of disease impact as well as an outcome measure in clinical trials. OBJECTIVES: To study the QOL of patients with multiple sclerosis (MS) in a population-based prevalence cohort and compare it with the general US population. DESIGN: Population-based prevalence cohort. SETTING: Olmsted County, Minn, population. PARTICIPANTS: All patients with definite MS (N = 201) alive and residing in Olmsted County on December 1, 2000. INTERVENTION: None. MAIN OUTCOME MEASURES: The expanded disability status scale (EDSS) and the Multiple Sclerosis Quality of Life Health Survey (MSQOL-54), which consisted of Short Form 36 (SF-36) with an additional 18 items pertinent to MS. RESULTS: The MSQOL-54 form was completed by 185 patients. Patients with MS had worse scores than the general US population with respect to physical functioning, vitality, and general health dimensions of the SF-36 QOL measure. Many QOL domains (pain, role emotional, mental health, and social functioning) were, however, similar for the 2000 MS cohort compared with the general US population. Duration of MS and EDSS score correlated significantly with physical functioning (P<.001). The QOL correlation with EDSS score was less than expected. No significant difference in the scores for the 8 QOL dimensions were found for patients with quick vs slow progression (quick progression defined as <5 years from onset to EDSS score of 3). The majority of patients with MS (77%) were mostly satisfied or delighted with their QOL. CONCLUSION: Though MS can cause significant disability, most patients with MS in the Olmsted County prevalence cohort continue to report a good QOL.     

Quality of Life (QOL) of patients with Gilles de la Tourette's syndrome

OBJECTIVE: This is the first study to investigate the Quality of Life (QOL) of patients with Gilles de la Tourette's Syndrome (GTS). METHOD: One hundred and three out-patients with GTS completed a semi-structured interview and 90 of these completed questionnaires screening for depression, anxiety and obsessive-compulsive behaviour. QOL was measured with the SF-36 and the Quality of Life Assessment Schedule (QOLAS). RESULTS: Patients with GTS showed significantly worse QOL than a general population sample. They had better QOL than patients with intractable epilepsy as measured by the QOLAS, although the SF-36 showed significant differences on the subscales Role Limitation due to physical problems and Social Functioning only. Factors influencing QOL domains were employment status, tic severity, obsessive-compulsive behaviour, anxiety and depression. CONCLUSION: QOL is impaired in patients with GTS. Measurement of QOL could be used alongside conventional measurements to assess benefit of treatment. We recommend the QOLAS and SF-36 be used.     

Testing the SF-36 in Parkinson's disease

Rating scales are increasingly the primary outcome measures in clinical trials. However, clinically meaningful interpretation of such outcomes requires that the scales used satisfy basic requirements (scaling assumptions) within the data. These are rarely tested. The SF-36 is the most widely used patient-reported rating scale. Its scaling assumptions have been challenged in neurological disorders but remain untested in Parkinson's disease (PD). We therefore tested these by analyzing SF-36 data from 202 PD patients (54% men; mean age 70) to determine if it was legitimate to report scores for the eight SF-36 scales and its two summary measures of physical and mental health, and if those scores were reliable and valid. Results supported generation of the eight SF-36 scale scores and their reliabilities were generally good (> or = 0.74 in all but one instance). However, we found limitations that question the meaningfulness of four scales and other limitations that restrict the ability of four scales to detect change in clinical trials (floor/ceiling effects, 19.6-46.2 %). The two SF-36 summary measures were not found to be valid indicators of physical and mental health. This study demonstrates important limitations of the SF-36 and provides the first evidence-based guidelines for its use in PD. The limitations of the SF-36 demonstrated here may explain some unexpected findings in previous studies. However, the main implication is a general one for the clinical research community regarding requirements for reporting rating scale endpoints. Specifically, investigators should routinely provide scale evaluations based on data from within major clinical trials.     

Stroke recovery profile and the Modified Rankin assessment

BACKGROUND AND PURPOSE: The purpose of this study was to examine the relationship between the Modified Rankin Scale (MRS) and poststroke recovery in neurological deficits, activities of daily living (ADL), higher level of physical and social functioning and the patients' preference for health state. METHODS: Four hundred and fifty-nine participants in the Kansas City Stroke Study were prospectively assessed for measures of MRS, NIH Stroke Scale (NIHSS), Barthel ADL, SF-36 physical functioning, SF-36 social functioning, and Time Trade-Off (TTO). ANOVA and Bonferroni multiple comparisons were used to examine any differences in 3-month scores of NIHSS, Barthel ADL, SF-36 physical functioning, SF-36 social functioning and TTO between levels of the MRS. In addition, SF-36 physical functioning, SF-36 social functioning and TTO were characterized in patients who demonstrated improvement in global MRS outcome and also achieved a Barthel Index (BI) > or = 95 at 3 months after stroke. RESULTS: Two hundred and eighty patients (62%) shifted at least one grade in MRS from baseline to 3 months after stroke. Only 67 or 194 patients were considered to have a favorable outcome using MRS 0/1 or MRS 0/1/2, respectively, as criteria. Mean 3-month NIHSS and Barthel ADL scores were not significantly different between Rankin 0/1 and 2, but they were significantly different among Rankin 3, 4 and 5 (all p < 0.05). Mean 3-month scores of physical functioning and SF-36 social functioning were significantly different among Rankin 0/1, 2, 3 and 4 (all pairwise p < 0.05). Proportions of patients who achieved NIHSS < or = 1 or BI > or = 95 decreased as MRS grades worsened. In patients who showed improvement in MRS global outcome and also achieved BI > or = 95, mean scores on TTO were similar. CONCLUSIONS: Definition of favorable outcomes should include transition in the Modified Rankin score rather than MRS dichotomized as 0/1 or 0/1/2 because patients with transition in MRS scores have improvement in ADL, increased higher level of functioning and higher utility for health state.     

脑卒中专门化生存质量量表(SS-QOL)中译本在冀南地区效度的研究

目的:探讨脑卒中专门化生存质量量表译本的效度。方法:对112名冀南地区脑卒中患者采用Rankin量表分级作为外在效标以评估辨别效度,同时进行卒中后1个月的NIHSS、Zung抑郁表、MMSE、Bathel指数、SF-36量表评定,以此作为“准金标准”,通过相关分析考察量表的效标效度。结果:随访发病后60例轻、中度脑卒中患者,SS-QOL译本以Rankin量表为外在效标的分组中,得分之间有显著差异。SS-QOL译本各领域显示与对应“标准”呈一定的相关性(相关系数0．37～0．89,P＜0．001)。结论:SS-QOL中译本在冀南地区轻、中度脑卒中患者中具有良好的效度。     

Does adding MS-specific items to a generic measure (the SF-36) improve measurement?

OBJECTIVE: The 36-item Short Form Health Survey Questionnaire (SF-36) is a widely used generic health status measure. Recently it has been adapted to produce a disease-specific measure for MS-the 54-item Multiple Sclerosis Quality of Life Scale (MSQOL-54)-composed of five unchanged SF-36 scales; three altered SF-36 scales (one item added to each scale); and five new scales incorporating 15 additional items. This study evaluates the impact of these additions by comparing the measurement properties of the MSQOL-54 with the SF-36. METHODS: A total of 150 patients with MS, representing a broad spectrum of disease severity, completed a range of questionnaires, which included the MSQOL-54 (from which the SF-36 score was computed). Of these, 44 people completed the measures before and after inpatient rehabilitation to evaluate responsiveness. Standard psychometric methods were used to evaluate the measurement properties. RESULTS: The measurement properties of the unchanged scales, inevitably, remain identical. Those of the three altered scales are virtually identical. Of the five new scales, the validity of the two sexual scales is questioned because of the high percentage of missing data, and the validity of the overall quality-of-life scale is limited as demonstrated by the low to moderate correlations with other related and unrelated measures. Responsiveness of the new scales also appears limited. CONCLUSION: Modifying existing measures by simply adding clinically chosen items may not be as useful as anticipated in improving the measurement properties of an instrument.     

The impact of disabilities on quality of life in people with multiple sclerosis

OBJECTIVE: People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. METHOD: Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning, Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS. RESULTS: Disabilities contributed to a unique and substantial extent to QOL variance. "Impairments in mental functions" was the most important QOL predictor. "Fatigue" showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and 'activities' components. CONCLUSION: Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.     

Japan stroke scales and its application for stroke]

There are many stroke scales currently available for estimating the severity and outcome of stroke. However, none of the stroke scales have been able to objectively quantify the severity of stroke. The Japan Stroke Society formed a subcommittee to task force the development of an innovative, quantifiable stroke scale. Conjoint analysis was utilized to compile this data. Finally, they developed a novel, and quantifiable Japan Stroke for the acute phase of stroke (JSS) (Stroke 32: 1800-1807, 2001). In addition to standard JSS, the Japan Stroke Scale Motor Function and Japan Stroke scale--Higher Cortical Function were finalized. These stroke scales are all parametric stroke scales. We utilize the stroke scales to monitor stroke patients, to start clinical pathway on patients with lacunas infarction after deciding whether severity of stroke is suitable for the clinical pathway by JSS. We use the JSS for the clinical studies of stroke patients. Furthermore, the JSS was utilized in the phase 2 trial of a new treatment in stroke patients which had significant statistical power. The scales were also introduced to the stroke databank. Therefore, these scales are useful to monitoring the neurological damage of stroke patients in the acute and chronic phase and to estimating the severity of stroke symptoms and predicting stroke outcome in clinical studies. They also have a potential to prove the efficacy of treatments through parametric analysis.     

The impact of venous thrombosis on quality of life

Quality of life (QOL) is increasingly seen as an important outcome in clinical care. Etiology, diagnosis, and management of venous thrombosis have been studied extensively, but only few studies have examined the impact of venous thrombosis on quality of life. The purpose of this study was to examine the impact of venous thrombosis on quality of life in a well-defined population of patients with venous thrombosis, by using both a generic and a disease-specific quality of life measure. A total of 45 patients from the thrombosis clinic of the University of Vermont in Burlington, VT, returned a mailed questionnaire including the Short-Form 36 (SF-36) and a disease-specific venous thrombosis-quality of life (VT-QOL) questionnaire about the problems faced by patients with venous thrombosis. The sample consisted of 13 men (28.9%) and 32 women (71.1%). The mean age was 44.1 years, with a range from 21 to 80 years. Compared with population norms of a general U.S. population that were adjusted for age and sex (N= 2463), venous thrombosis patients scored significantly lower (p < 0.05) on all subscales of the SF-36. Patients with the postthrombotic syndrome (PTS) appeared to have more impairment in their quality of life as measured by both the SF-36 and the disease-specific questionnaire. All correlations between the SF-36 subscales and the subscales of the VT-QOL were significant, most of them on a p < 0.01 level. Given the impact of venous thrombosis and the postthrombotic syndrome on quality of life, assessment of QOL should be included in future studies on the outcome of venous thrombosis.     

Quality of life 6 months after acute stroke: impact of initial treatment in a stroke unit and general medical wards

BACKGROUND AND PURPOSE: Few studies have assessed the influence of the organization of stroke care on health-related quality of life (HRQoL). The present study compared HRQoL 6 months after stroke between subjects who had been treated in an acute stroke unit (SU) and those treated in general medical wards (GMW). METHODS: In total 550 subjects > or = 60 years of age with acute stroke were prospectively allocated according to date of birth (day of the month) to treatment in an SU with short length of stay or GMWs. In the present study, 325 survivors at 5 days with Scandinavian stroke scale (SSS) orientation score > 5 and SSS speech score > 5 were included. We assessed HRQoL with the Short Form 36 (SF-36) questionnaire 6 months after stroke onset and estimated utility values from the SF-36 scores. RESULTS: Of the 325 eligible subjects, 158 were allocated to an SU and 167 to GMWs. Among 296 survivors at 6 months, 115 subjects (79% of survivors) in the SU group completed the questionnaire and 121 (80%) in the GMW group. There was no statistically significant difference between the treatment groups on any of the 8 SF-36 scales or the 2 component summary scales. After integrating death in the comparison of HRQoL, there was still no difference in outcome between the groups. CONCLUSION: An acute SU with a short length of stay, offering early treatment and rehabilitation, could not show an improvement in the HRQoL of stroke patients > or = 60 years 6 months after stroke compared with initial treatment in GMWs.     

Measuring quality of life in a way that is meaningful to stroke patients

OBJECTIVE: To identify predictors of poststroke quality of life. BACKGROUND: Health-related quality of life (HRQOL) measures assess the impact of disease on the physical, emotional, and social aspects of patients' lives. Although HRQOL measures are used increasingly, factors associated with HRQOL poststroke and the ability of stroke-specific versus generic HRQOL measures to predict patient-reported HRQOL are not well known. METHODS: A total of 71 patients were evaluated 1 month postischemic stroke with a new stroke-specific HRQOL measure-the SS-QOL-and the SF-36, a generic HRQOL measure. Stroke severity, impairments, and functional limitations were also measured. Demographic variables and outcome measure scores were compared between patients rating their overall HRQOL the same as pre-stroke versus those with overall HRQOL worse than prestroke. Independent predictors of overall HRQOL were identified using multivariable modeling. RESULTS: Variables associated with better overall HRQOL were higher (better) SS-QOL and Barthel Index scores, and lower (better) NIH Stroke Scale and Beck Depression Inventory scores. Independent predictors of good overall HRQOL were the SS-QOL score (odds ratio [OR], 2.97; 95% CI, 1.3, 7.1; p = 0.01) and NIH Stroke Scale score (OR, 0.69; 95% CI, 0.47, 0.99; p = 0.05). Demographic factors and SF-36 scores were not associated with overall HRQOL ratings. CONCLUSIONS: Stroke-specific quality of life score and patient impairments predict patient-reported overall health-related quality of life (HRQOL) poststroke. SF-36 scores were not associated with overall HRQOL ratings. Disease-specific HRQOL measures are more sensitive to meaningful changes in poststroke HRQOL and may thus aid in identifying specific aspects of poststroke function that clinicians and "trialists" can target to improve patients' HRQOL after stroke.     

Quality of life in patients with axonal polyneuropathy

“Quality of life” (QOL) measurement reflects the impact of a disease on the daily life of a patient, and this can be used as an outcome measure in clinical trials. QOL measurements are rarely used in patients with neuromuscular disease. The aim of this study was to determine whether QOL is reduced in chronic polyneuropathy, whether there is a relationship between QOL and objective measures of disease severity, and whether measuring QOL is a useful addition to the assessment of severity of polyneuropathy. We measured QOL in 90 patients with chronic axonal polyneuropathy (33 with hereditary motor and sensory neuropathy type II and 57 with chronic idiopathic axonal polyneuropathy) using the RAND 36-item Health Survey questionnaire (RAND-36). We compared the results with the QOL of a reference population, with summed motor and sensory scores, and with the Rankin scale for handicap. Patients had worse scores than the reference population on seven of eight areas of the RAND-36. Patients with both low motor and low sensory scores rated lower in physical and emotional areas than less impaired patients. A low Rankin score was related only to physical domains. We conclude that in patients with chronic axonal polyneuropathy the severity of disease can be assessed with a general QOL instrument, and that this provides additional information, particularly on areas related to emotional and social functioning. Received: 8 April 1999/Received in revised form: /28 September 1999/Accepted: 17 November 1999     

Individual variation and task effects: Response to Inglis

Background: Stroke is a major global health problem. Aphasia, as a complication of stroke, has an impact on the quality of life (QOL). Few studies exist on the factors associated with QOL of people with aphasia (PwA), especially in communication, in emerging countries.

Aims: To evaluate factors associated with QOL in the domain of communication using Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39) to assess PwA in the southern region of Brazil.

Methods &; Procedures: Medical files of participants diagnosed with ischaemic stroke admitted to a public hospital in Joinville, Brazil, from August 2010 to December 2011 were reviewed. QOL in PwA was assessed using SAQOL-39 scale. Some factors associated with prognosis of aphasia were assessed with respect to QOL with an emphasis on the communication domain.

Outcomes &; Results: Of 50 PwA evaluated, 60% were male. The mean age was 69.6 years and the average time after stroke was 11.7 months. Overall mean score on the SAQOL-39 scale was 3.09, standard deviation (SD) = 0.6, range = 1.67–4.62. The psycho-social domain demonstrated a statistical trend towards significance for the lowest score obtained (p = .09). The habit of reading pre- and post-onset of stroke, higher economic level, larger time post-onset of stroke and higher physical domain scores were significantly associated with higher scores in the communication domain. There was no association between the communication domain scores with age, gender, caregivers, number of inhabitants in the home and physical and social activity.

Conclusion: In the communication domain, reading showed positive implications on QOL. Further studies are needed to evaluate the role of reading practices as a therapeutic option in PwA.