Development of a stroke-specific quality of life scale.

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 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). 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.     

Evaluation of measures used to assess quality of life after stroke

BACKGROUND AND PURPOSE: 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. SUMMARY OF REVIEW: 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. CONCLUSIONS: 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.     

The stroke impact scale version 2.0. Evaluation of reliability, validity, and sensitivity to change.

BACKGROUND AND PURPOSE: To be useful for clinical research, an outcome measure must be feasible to administer and have sound psychometric attributes, including reliability, validity, and sensitivity to change. This study characterizes the psychometric properties of the Stroke Impact Scale (SIS) Version 2.0. METHODS: Version 2.0 of the SIS is a self-report measure that includes 64 items and assesses 8 domains (strength, hand function, ADL/IADL, mobility, communication, emotion, memory and thinking, and participation). Subjects with mild and moderate strokes completed the SIS at 1 month (n=91), at 3 months (n=80), and at 6 months after stroke (n=69). Twenty-five subjects had a replicate administration of the SIS 1 week after the 3-month or 6-month test. We evaluated internal consistency and test-retest reliability. The validity of the SIS domains was examined by comparing the SIS to existing stroke measures and by comparing differences in SIS scores across Rankin scale levels. The mixed model procedure was used to evaluate responsiveness of the SIS domain scores to change. RESULTS: Each of the 8 domains met or approached the standard of 0.9 alpha-coefficient for comparing the same patients across time. The intraclass correlation coefficients for test-retest reliability of SIS domains ranged from 0.70 to 0.92, except for the emotion domain (0.57). When the domains were compared with established outcome measures, the correlations were moderate to strong (0.44 to 0.84). The participation domain was most strongly associated with SF-36 social role function. SIS domain scores discriminated across 4 Rankin levels. SIS domains are responsive to change due to ongoing recovery. Responsiveness to change is affected by stroke severity and time since stroke. CONCLUSIONS: This new, stroke-specific outcome measure is reliable, valid, and sensitive to change. We are optimistic about the utility of measure. More studies are required to evaluate the SIS in larger and more heterogeneous populations and to evaluate the feasibility and validity of proxy responses for the most severely impaired patients.     

Profile of health-related quality of life in Nigerian stroke survivors

Background and purpose:  No study using a stroke-specific measure has been previously conducted to determine the profile of health-related quality of life (HRQOL) in Nigerian stroke patients. Such a study is pre-requisite to planning of patient-centered rehabilitative care aimed at maximizing HRQOL improvement. Our objectives were to develop and validate a stroke-specific HRQOL measure, and determine the profile of HRQOL using it.
Methods:  The HRQOL in stroke patients (HRQOLISP) questionnaire was developed and administered to 100 stroke patients and a control group of 100 age- and gender-matched healthy adults. The Stroke Levity Score (SLS) and modified Rankin Scale (mRS) were applied to measure stroke severity and disability respectively.
Results:  The HRQOLISP surpassed the Nunnaly's criterion for reliability and was able to discriminate between stroke (HRQOLsum = 73.5 ± 9.1) and normal subjects (HRQOLsum = 84.4 ± 6.9, P  = 0.002). It differentiated strokes of various severities in the physical dimension (physical, psychological, cognitive and social domains). SLS and mRS correlated only to the domains in the physical dimension.
Conclusion:  The HRQOLISP demonstrated good content, construct and discriminant validity and internal consistency reliability. Stroke had a multifaceted effect on HRQOL, which was more pronounced in the physical dimension.     

Conceptualization of a new stroke-specific outcome measure: the stroke impact scale

Current stroke outcome measures are unable to detect some consequences of stroke that affect patients, families, and providers. The objective of this study was to ensure the content validity of a new stroke outcome measure. This was a qualitative study using individual interviews with patients and focus group interviews with patients, caregivers, and health care professionals. Participants included 30 individuals with mild and moderate stroke, 23 caregivers, and 9 stroke experts. Qualitative analysis of the individual and focus group interviews generated a list of potential items. Consensus panels reviewed the potential items, established domains for the measure, developed item scales, and decided on mechanisms for administration and scoring. Although the participants with stroke appeared highly recovered based on scores from conventional stroke assessments (Barthel Index and NIH Stroke Scale), stroke survivors and their caregivers identified numerous persisting impairments, disabilities, and handicaps. In general, stroke survivors described themselves as only about 50% recovered and reported that they had difficulty in activities in which they were not independent. To fully assess the impact of stroke on patients, we used the results of this qualitative study to develop a new stroke-specific outcome, the Stroke Impact Scale.     

Quality of life: eating disorders

OBJECTIVE: There is a lack of measurements with predictive validity that are specific for quality of life (QOL) in patients with eating disorders. METHOD: A total of 306 eating disorder patients treated as inpatients completed the Quality of Life for Eating Disorders (QOL ED): 109 at both admission and discharge from hospital, 65 at both admission and after 12 months. Patients also completed well-validated measures of eating disorders, psychological dysfunction and general physical and mental QOL. QOL ED consists of 20 self-report questions that provide scores for the domains of behaviour, eating disorder feelings, psychological feelings, effects on daily life, effects on acute medical status and body weight, and a global score. RESULTS: QOL ED domain scores correlated appropriately with previously validated well-known measures of eating disorders, psychological dysfunction, general QOL and behaviour and body weight (p < 0.001). The QOL ED shows high reliability (Cronbach's alpha = 0.93). All scores changed significantly and appropriately during inpatient hospital treatment and between admission and 12 months after discharge from hospital (p < 0.001). The scores differed for anorexia nervosa, bulimia, eating disorder not specified (EDNOS) and no diagnosis. All no diagnosis (recovered) domain and global scores were significantly different from all diagnoses scores (p < 0.001). CONCLUSION: This quick, simple instrument fulfils all potential uses for QOL assessments in the clinical and research settings associated with eating disorders, including outcome.     

Quality of life in Essential Tremor Questionnaire (QUEST): development and initial validation

BACKGROUND/OBJECTIVE: Essential tremor (ET) can diminish functioning and quality of life (QOL) but generic QOL measures may be relatively insensitive to ET and its therapies. We sought to develop an ET-specific measure that might be more sensitive, acceptable to patients, relatively brief, and easily used. DESIGN/METHODS: A sample of 200 patients (average age 70 years, range 30-91; average disease duration 15 years) rated the extent to which tremor impacts a function or state, tremor severity in various body parts, perceived health, and overall QOL. Responses to this initial questionnaire were subjected to principal components analysis (PCA). Inspection of factor coordinates, Eigenvalues, variance accounted for, and correlation matrices were used to select items for confirmatory PCA. Final scale reliability was assessed using Cronbach's alpha. Validity was evaluated by correlations between QOL scales and self-rated tremor severity. RESULTS: PCA of 65 initial items yielded 11 factors accounting for 71% of variance. Six factors were discarded. Two items were eliminated for not loading on a factor and 33 for perceived redundancy. Confirmatory PCA of the retained 30 items yielded an almost identical factor structure (six factors, 70% of variance accounted for, and similar item loadings). Because two factors had very few items loading on them, these two factors were combined into one scale. The final measure has five scales: Physical, Psychosocial, Communication, Hobbies/Leisure, and Work/Finance. Reliability was excellent for the whole instrument and four scales (> or =0.89), and good for the Work/Finance scale (0.79). Severity of voice and head tremor were the best correlates of Communication (0.70 and 0.35), while the Physical scale was related to right and left upper extremity tremor (0.59 and 0.56). Scales correlated more highly with patients' rating of their overall QOL than their health perception. CONCLUSIONS: A brief, 30-item, ET-specific QOL scale with excellent reliability was developed. Preliminary validity data are encouraging. The Quality of Life in Essential Tremor Questionnaire (QUEST) promises to facilitate QOL measurement in ET.     

Primary care patients' opinions regarding the importance of various aspects of care for depression

The objectives of this study were to 1) ascertain the importance of various aspects of depression care from the patient's perspective and 2) select items and scales for inclusion in a new instrument to measure primary care patients' attitudes toward and ratings of depression care. We used a cross-sectional survey at a university-based urban primary care clinic; the subjects were adult patients being recruited for a study of minor depression. To help prioritize attitudinal domains, including 126 items identified previously in focus groups, we asked patients to rate the importance of each aspect of depression care on a five-point scale. Items were ranked according to mean scores and the percentage of patients ranking the items as extremely important. The items were selected for inclusion in an instrument to measure patients' attitudes toward depression care based on their importance ratings. We performed reliability and validity testing of scales comprising the 30 most important items and a shortened version that includes 16 items. The sample included 76 patients (mean age 34.8 years; mean CES-D score, 22.2; 72% women; 36% African-American; 32% college graduates). Forty-six percent had visited a mental health professional in the past. The top 30 items for the overall sample came from the following domains: 1) health care providers' interpersonal skills, 2) primary care provider recognition of depression, 3) treatment effectiveness, 4) treatment problems, 5) patient understanding about treatment, 6) intrinsic spirituality, and 7) financial access to services. Scales comprising items from these domains show adequate internal consistency (Cronbach's alpha >0.70) as well as convergent and discriminant validity. We have designed a brief patient-centered instrument for measuring attitudes toward depression care that has evidence for internal item consistency reliability and discriminant validity.     

Quality of life after spinal cord injury

Quality of life (QOL) is an often-used but it remains an ill-understood concept in medicine. Literature suggests 3 important approaches to operationalize and measure QOL: Health-related quality of life (HRQOL), well-being, and QOL as a superordinate construct. To measure the various instruments of HRQOL (SF-36 and Sickness Impact Profile) and well-being (Satisfaction With Life Scale and Life Satisfaction Questionnaire LiSat) are used. Domains on which QOL of persons with SCI lag behind QOL of the general population are identified. Overall, this paper suggests: (1) that inspection of the QOL measure used in a particular study is necessary to identify the domains of QOL that are measured, (2) that most measures lack sufficient evidence of reliability and validity, and (3) that longitudinal studies starting in the early phase of rehabilitation are necessary to reveal the course and predictors of QOL of persons with SCI.     

Facets and determinants of quality of life in patients with recurrent high grade glioma

OBJECTIVES: To assess patients with recurrent high grade brain glioma with the aim of evaluating facets of quality of life (QOL) and their association with mood, cognition, and physical performance. METHODS: Ninety four glioma patients (four groups with different duration of glioma recurrence) were compared with 24 patients with other chronic neurological diseases and 48 healthy subjects. The Functional Living Index-Cancer (FLIC) provided QOL self evaluations, and standardised scales and neuropsychological tests assessed physical performance, mood, and cognition. RESULTS: In glioma patients, factor analysis of the FLIC items documented five domains: Psychological well being, Role/sociability, Inner experience of disease, Isolation/sharing, and Nausea. Higher FLIC total scores were related to better cognition, physical performances, and mood, and lower grading; poorer Psychological well being and worse Inner experience of disease to depressed mood; minor Role/sociability to worse cognitive and physical performances and higher grading; worse Nausea to longer disease duration. Compared with healthy subjects, all glioma groups were cognitively impaired and more anxious, and two groups with short duration of recurrence were also more depressed. Patients with chronic neurological diseases showed worse mood and cognitive abilities compared with healthy subjects, but performed attention tests better than glioma patients. Glioma and chronic disease patients showed similar FLIC scores and autonomy. CONCLUSIONS: These results show that QOL of recurrent high grade glioma patients is multifaceted and determined by multiple factors. Disease severity does not necessarily eliminate the possibility of expressing personal feelings and opinions which could provide criteria for clinical decision making and psychological support.     

The validity and reliability of chinese frontal assessment battery in evaluating executive dysfunction among Chinese patients with small subcortical infarct

OBJECTIVES: Frontal Assessment Battery (FAB) is a valid and reliable screening test for evaluating executive dysfunction among whites with frontal and subcortical degenerative lesions. We studied the properties of a Chinese version of FAB (CFAB) in evaluating executive dysfunction among Chinese stroke patients with small subcortical infarct. METHODS: Concurrent validity was evaluated using Wisconsin Card Sorting Tst (WCST) and Mattis Dementia Rating Scale-Initiation/Perseveration Subset (MDRS I/P) among 41 controls and 30 stroke patients with small subcortical infarct. Discriminant validities of CFAB and its subitems were compared with those of Mini-Mental State Examination (MMSE). Internal consistency, test-retest, and interrater reliability of CFAB were evaluated. RESULTS: The CFAB had low to good correlation with various executive measures: MDRS I/P (r = 0.63, p < 0.001), number of category completed (r = 0.45, p < 0.001), and number of perseverative errors (r = -0.37, p < 0.01) of WCST. Among the executive measures, only number of category completed had significant but small contribution (6.5%, p = 0.001) to the variance of CFAB. A short version of CFAB using three items yielded higher overall classification accuracy (86.6%) than that of CFAB full version (80.6%) and MMSE (77.6%). Internal consistency (alpha = 0.77), test-retest reliability (rho = 0.89, p < 0.001), and interrater reliability (rho = 0.85, p < 0.001) of CFAB were good. CONCLUSION: Although CFAB is reliable, it is only moderately valid in evaluating executive dysfunction among Chinese stroke patients with small subcortical infarct. The clinical use of CFAB in the evaluation of executive dysfunction among this group of patients cannot be recommended at this stage.     

Development and psychometric performance of the schizophrenia objective functioning instrument: An interviewer administered measure of function

Existing measures for functional assessment do not adequately address the relationship between cognitive impairment and function. The Schizophrenia Outcomes Functioning Interview (SOFI) was developed to measure community functioning related to cognitive impairment and psychopathology.Following review of existing measures and discussion with experts, caregivers, and patients, content was generated for four domains: 1) living situation; 2) IADLs; 3) productive activities; and 4) social functioning. The final SOFI was constructed with items informing domain scores, and an interviewer-completed global rating for each domain.Psychometric characteristics of the SOFI were evaluated in a sample of 104 community residing patients with schizophrenia and their informants. Test–retest reliability was evaluated in a sub-sample of patient–informant dyads using ICC; all values were > 0.70 for both patient-interviews (SOFI-P) and informant-interviews (SOFI-I). Inter-rater reliability ICCs ranged from 0.50 to 0.79 on a different sub-sample. The SOFI demonstrated adequate construct validity based on correlations with the PSP (range 0.58 to 0.76; p < 0.0001) and the QLS (p < 0.001). Some correlations between SOFI and PETiT scores were low to moderate (p < 0.05). Discriminant validity was supported based on SOFI score comparisons for patient groups based on PANSS and BACS scores (p < 0.05); SOFI scores differed between borderline and moderately ill patients as measured by the CGI-S (p < 0.05).The SOFI expands on existing measures and more comprehensively captures functioning of patients in the real world than other performance-based (proxy) measures. The SOFI has good evidence supporting reliability and construct validity, and may be a useful measure of functional outcomes in schizophrenia.     

The Personal Impact of Epilepsy Scale (PIES)

ObjectiveThe impact of epilepsy is manifest by effects related to seizures and side effects of therapy and comorbidities such as depression. This report describes the development of a brief patient-reported outcome (PRO) instrument, the Personal Impact of Epilepsy Scale (PIES), to measure the influence of epilepsy overall and in each of these domains.MethodsInstrument development followed standard procedures and an FDA Guidance. People with epilepsy were surveyed with open-ended questions to derive major themes of their concerns, resulting in 4 key areas: seizures, side effects, comorbidities, and overall quality of life (QOL). A preliminary set of 152 questions was based on these themes and completed by 50 patients, age 42.7 (range: 21–71) years, concurrent with comparator instruments, including the NH Seizure Severity Scale (NHSSS), the Liverpool Adverse Events Profile (LAEP), the Quality of Life in Epilepsy (QOLIE-31) scale, the Beck Depression Inventory, and the Epilepsy Foundation Depression: A Checklist. A multiple regression model indicated which PIES measures were associated with scores from the comparator instruments. Questions in each of the domains were selected for correlations and nonduplication. Test–retest consistency at a 3-day interval was completed by 38 subjects and a final set of questions constructed.ResultsThe final question set comprised 25 items: 9 about characteristics of seizures, 7 about medication side effects, 8 about comorbidities, and 1 about overall quality of life. All items had 5 response choices (0–4), with higher scores reflecting more negative status. A total of 46 subjects completed the 25 questions. Cronbach's alpha was 0.87, indicating good internal consistency. Each of the three domains correlated well with the overall QOL item. The questions pertaining to seizures correlated with the NHSSS, the side effect questions with the LAEP, and the comorbidity questions with the QOLIE-31.ConclusionThe PIES provides a simple, brief PRO measure as a profile of overall impact of seizures, medication side effects, comorbidities, and overall QOL for people with epilepsy. Further study will explore sensitivity to change quantification of the minimal clinically significant change.     

Reliability and validity of a Chinese version of the Stigma Scale for Chronic Illness (SSCI) in patients with stroke

Objectives The aim of this study was to evaluate the reliability and validity of the Chinese version of the Stigma Scale for Chronic Illness (SSCI) in patients with stroke.

Methods In total, 220 patients with stroke were recruited to complete the scale. The reliability of the SSCI was evaluated using internal consistency and test–retest methods. Exploratory factor analysis (EFA) was conducted to identify domains of the SSCI. Convergent validity was determined by analyzing the correlation between SSCI scores, activities of daily living (ADL) and depression.

Results Construct validity was determined by factor analysis, extracting three factors with eigenvalues greater than 1, explaining 30.5%, 25.7%, and 8.5% of the variance, respectively, and accounting for 64.8% of the variance. All items had factor loadings above 0.40. The first factor comprised questions related to ‘self-stigma’ (items 1–13). The second (items 14–22) and third (items 23–24) factors aggregated questions related to ‘enacted stigma’. In terms of convergent validity, the SSCI total scale was moderately correlated to the Barthel Index (BI) and the Self-rating Depression Scale (SDS). Cronbach’s alpha value (internal reliability) for the total SSCI score was 0.949, and the intraclass correlation coefficient value (test-retest reliability) was 0.802.

Discussion The results provide initial evidence that the SSCI is a reliable and validated measure for evaluating stigma in stroke patients in China.     

The Inflammatory Bowel Disease Stress Inventory (IBD-SI). A measure of psychosocial stress in patients with IBD

The "Inflammatory Bowel Disease Stress Inventory (IBD-SI)" measures a broad spectrum of disease-specific every day stress factors in patients with inflammatory bowel disease (IBD). Based on a multistage factor analysis on 300 CED patients, the final form comprises 32 items assigned to 8 different domains: depressed mood, doctor-patient relationship, anxiety about loss of bowel control, occupational impairment, worries about deteriovation, stress from medical treatment, impairment of sexuality/partnership and physical complaints. In addition, a global stress score can be obtained. The reliability values of the 8 subscales with 4 items each indicate a good internal consistency (alpha = 0.76 - 0.89) and a high retest reliability (r = 0.75 - 0.92). Significant correlations with medical and psychological variables supports the external validity of this questionnaire.     

Patient-based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL

PURPOSE: In epilepsy, patient-based assessments are increasingly used as outcome measures in clinical trials of novel therapies alongside the traditional clinical measures of efficacy. The objective of this study was to validate psychometrically a quality of life (QOL) measure developed for use with recently diagnosed epilepsy patients. METHODS: The NEWQOL (Quality of Life in Newly Diagnosed Epilepsy Instrument) is a 93-item self-administered battery designed to assess QOL in patients with new-onset epilepsy. NEWQOL consists of eight multi-item scales (13 subscales) measuring several health parameters: Anxiety, Depression, Social Activities, Symptoms, Locus of Control/ Mastery, Neuropsychological Problems (includes the following subscales: Fatigue, Memory, Concentration, Motor Skills, and Reading), Social Stigma, Worry, Work Limitations, and several single-item measures (General Health, Number of Seizures, Social Limitations, Social Support, Self Concept, Ambition Limitations, Health Transition, and General Limitations). The NEWQOL was collected at baseline and 1 week post-baseline from 108 patients in the U.K. and U.S. RESULTS: All of the multi-item scales had high item discriminant validity, good test-retest reliability, and acceptable levels of internal consistency reliability; all but the Reading and Stigma subscales had negligible floor and ceiling effects. General linear models were used to examine the known groups validity of NEWQOL. Significant differences were observed in the Worry, Symptoms, Summary Neuropsychological Scales, and all Neuropsychological subscales (Memory, Fatigue, Concentration, Motor Skills, and Reading), indicating poorer functioning in the more frequent or severe seizure groups. CONCLUSIONS: Results from this study offer supportive evidence that NEWQOL has good validity and reliability and can discriminate between patient groups, particularly in relation to symptoms and psychological problems. We conclude that NEWQOL represents a useful measure for future studies in this patient population.     

脑卒中后生活质量量表3.0代理人版中文版的测试及评价

背景对于卒中的幸存者来说,生存质量是患者对于自身健康、生活满意程度、物理功能的主观评定.对于那些不能自己完成量表的卒中患者,我们可以尝试替代测量.然而迄今还没有学者将QOL的代理人量表引入中国.我们的研究目的是编译脑卒中生存质量影响量表(SIS 3.0)代理人版本,考察中文版的信度、效度和反应度,探讨代理人代替病人测试生存质量(QOL)的可行性.方法翻译(将原量表译成中文)和回译(将译文译回英文,与原文比较)原量表后,并作适当改进,然后对量表作心理学考评.选择10对病人及其代理人进行初试,再另选231对病人及代理人用于正式研究.病人的入选条件年龄＞18岁;脑卒中患者(包括脑出血和脑梗死);脑卒中的诊断符合WHO 诊断标准;且都有CT/MR证据.排除条件为TIA;卒中前有永久性残疾;严重的合并症(Ⅲ-Ⅳ级心衰,必须血液透析,严重的肌肉骨骼疾患影响物理功能,癌症,活动期精神病或痴呆,AIDS).代理人的入选条件年龄＞18岁;认识病人至少1年;每周与病人会面的次数至少1次,每次见面的时间至少1小时.排除条件精神状态简易速检表(MMSE)量表评分＜16分.对这些病人和代理人进行一系列量表的测试,包括SIS 3.0代理人版中文版,和其他公认的用于做测评工具的量表,包括医疗结局研究简表(medical outcomes study form 36, MOS SF-36)的中文版、Barthel指数(Barthel Index, BI)、汉密顿抑郁量表(HAMD)考察各个领域的标准效度.使用牛津残障评分(OHS)作为分组依据来考察SIS 3.0的反应度.我们选择了量表完成率和完成量表的时间两个指标来考察可行性;选用分半信度和克朗巴赫系数(α)来考察信度;选用内容效度、标准效度、结构效度来考察效度;通过比较不同残疾程度的病人的SIS 3.0得分来考察反应度.此外,我们比较了病人同代理人得分的差异.结果该中文版量表可行性好.分半信度和α系数均大于0.8,表明信度好.经专家评审后,认为表的内容与测试目的吻合.此外,量表各个测试条目得分与所属领域总分的Pearson相关系数在0.620～0.969之间,P值＜0.01.因子分析结果表明量表的结构与设计时的构想基本吻合.因为目前缺乏"交流"领域金标准,因此没有作该领域的标准效度检验.剩余的七个领域与已知公认量表的相应领域高度相关,Pearson相关系数＞0.5,P=0.000,具有良好的相关性,说明标准效度好.牛津残障评分(OHS)分组下的单因素方差分析显示量表可以区分不同残疾程度的病人,且随着病人残疾程度的加重,QOL评分总体呈下降趋势,表明反应度好.使用配对t检验和组间相关系数,分领域考察病人和代理人得分的差异,结果表明无统计学差异.结论 SIS 3.0代理人版中文版的信度、效度和反应度是满意的,用代理人代替病人进行QOL研究是可行的.     

Procedure for Developing a Quality-of-Life Measure for Epilepsy Surgery Patients

Summary: In 1990, the NIH Consensus Conference Panel on epilepsy surgery called for the development and use of reliable and valid health-related quality-of-life (HRQOL) measures in epilepsy surgery studies. A HRQOL measure for epilepsy surgery patients has been developed and evaluated. The procedure, which could also be used to develop HRQOL measures for other neurological diseases, entails the following steps: (a) specify desired characteristics of the measure; (b) identify relevant HRQOL areas by reviewing the literature; (c) assemble generic core items and disease-specific supplementary items; (d) pilot test and revise the measure; (e) administer revised measure items to a large sample of epilepsy surgery patients; (f) perform item analysis to evaluate hypothesized item placement within scales; and (g) assess the reliability and validity of the scales. The product of this process, the Epilepsy Surgery Inventory (ESI)-55, is a self-report measure of 11 dimensions of HRQOL. It is brief, comprehensive, and reliable; preliminary evidence supports its validity.     

Neurological outcome and quality of life after stroke due to vertebral artery dissection

BACKGROUND: Vertebral artery dissection is a well-recognized cause of posterior circulation stroke for which there is relatively little information on long-term outcomes. Quality of life (QOL) is an important patient-centred outcome measure. METHODS: Stroke due to vertebral artery dissection was conservatively defined by neuroimaging documentation. Thirty sequential cases were identified based on a retrospective database and chart review with prospective follow-up. Surviving patients completed the Short Form-36 (SF-36) and the Stroke-Specific Quality of Life (SSQOL) scales and were subsequently examined neurologically and scored on the National Institutes of Health Stroke Scale (NIHSS). Comparisons were made between outcome on the stroke scale and QOL scales and between outcome on the SF-36 and the Canadian population. RESULTS: There was discordance between outcomes recorded on a standard stroke scale and QOL measures with more patients scoring poorly on QOL measures. QOL was low in one third of the survivors. Overall QOL was significantly lower than the general population. CONCLUSIONS: Stroke due to vertebral artery dissection results in poorer outcomes on patient-centred QOL measures than on a standard stroke scale.     

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。