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1.
BACKGROUND: Although QOL is an important indicator to assess multiple facets of life, the QOL of Alzheimer's disease (AD) subjects with impaired cognitive ability due to dementia has not yet been fully investigated. In this study, we developed the Japanese version of the Quality of Life-Alzheimer's disease (QOL-AD) scale by means of back-translation, and ascertained its reliability and validity for evaluating the quality of life in AD subjects. We also hypothesized that the presence of neuropsychiatric symptoms may determine the characteristics and determinants of both the patients' and the caregivers' responses to the patients' QOL questionnaire. METHODS: We administered the QOL-AD questionnaire to subjects with mild or moderate AD (n = 140). The test-retest reliability was evaluated by the same interviewer after a month's interval. Data from the following tests were also collected to ascertain the validity of the questionnaire: Short Memory Questionnaire (SMQ), Neuropsychiatry Inventory (NPI), Hyogo Activities of Daily Living Scale (HADL) and Mini-Mental State Examination (MMSE). RESULTS: The Japanese version of the QOL-AD questionnaire demonstrated good internal reliability for both the patients' (Cronbach's alpha = 0.84) and the caregivers' responses (Cronbach's alpha = 0.82) and good test-retest reliability for both the patients' (intraclass correlation coefficient = 0.84) and caregivers' reports (intraclass correlation coefficient = 0.91). The concordance between the patients' self-report and the caregivers' observation was moderate (Pearson correlation coefficient = 0.60). The score for the 'mood factor' (apathy, depression/dysphoria) in NPI predicted the overall QOL score as determined from both the patients' and the caregivers' responses for subjects with mild (MMSE>or=21, n = 88) and moderate (MMSE< 21, n = 52) AD. The score for the 'psychosis factor' (delusions, hallucinations, anxiety, agitation, disinhibition, irritability, aberrant motor activity) in NPI predicted the total QOL score as determined by the patients and the caregivers among subjects with moderate AD only. CONCLUSIONS: As hypothesized, the presence of neuropsychiatric symptoms may be an important predictor of both the patients' and caregivers' responses to the patients' QOL questionnaire. QOL-AD appears to be a promising measure of the QOL of subjects with mild to moderate AD in Japan.  相似文献   

2.
PURPOSE: The aim of this validation study was to evaluate the internal consistency (internal reliability) and test-retest reliability (external reliability) of the Chinese version of the self-report health-related quality of life measure for children and adolescents with epilepsy. METHODS: Children and adolescents with epilepsy between the ages of 8 and 18 years were conveniently sampled in two regional hospitals in Hong Kong. They were requested to complete the 25-item questionnaire twice, with a test-retest interval of 10 to 14 days. Internal consistency and test-retest reliability were measured with Cronbach's alpha coefficient and the intraclass correlation coefficient, respectively. RESULTS: A sample of 50 patients completed the first questionnaire. Internal consistency was adequate on four of five subscales and marginal in the remaining one. Forty-two subjects repeated the questionnaire. The test-retest reliability was acceptable for all five subscales. CONCLUSIONS: The Chinese version of the health-related quality of life measure for children and adolescents with epilepsy demonstrated acceptable internal consistency and test-retest reliability. Further studies are required to study other psychometric properties such as construct validity and factor analysis.  相似文献   

3.
A psychometric evaluation of a French transcultural version of the quality of life in epilepsy inventory-31 (QOLIE-31) was carried out. QOLIE-31 was compared to a generic health-related quality of life questionnaire, the Nottingham health profile (NHP). The psychometric properties of QOLIE-31, assessed in 190 adults with epilepsy, included: acceptability, test-retest reliability and validity (multi-trait analysis including internal consistency and item-to-scale correlations, construct validity using factor analysis, discriminative validity using relationship with disease characteristics, treatment effects, divergent and convergent validity using correlations with NHP scores). Both acceptability and reproducibility were good and internal consistency was high (Cronbach's alpha coefficient = 0.86). Factor analysis with varimax rotation identified seven factors with eigenvalues > 1, with two factors, related to cognitive function and mood, accounting for 46.5% of the variance. However, goodness of fit indices revealed that a model with four factors best fitted the data. The first factor corresponds to a generic mental dimension, the second is equivalent to the cognitive functioning dimension, the third to medication effects including social functioning, and the fourth to seizure worry. Discriminative validity was good for seizure control and treatment tolerability. High correlations between QOLIE-31 and pertinent NHP scales (emotional reactions, energy and social isolation) were observed. The French version of QOLIE-31 thus meets established psychometric criteria for reliability and validity.  相似文献   

4.
PURPOSE: To develop a Norwegian version of the Quality of Life in Epilepsy Inventory (QOLIE-89) and to confirm its psychometric properties. METHODS: The QOLIE-89 was adapted to Norwegian language through a translation-backtranslation procedure. The assessment included 397 patients with epilepsy. We assessed internal consistency and test-retest reliabilities. Construct validity was assessed by correlating scales with items of the 15D health status questionnaire, and discriminant validity was assessed by comparing scores for known groups. RESULTS: The internal consistency reliability (Cronbach's alpha, 0.76-0.92) and test-retest reliability (intraclass correlation coefficient, 0.67-0.96) for the individual domains were acceptable. Spearman's rank correlations between QOLIE-89 domain scores and corresponding 15D single-item scores were high (p, 0.47-0.76), and generally higher than the associations between noncorresponding items. Most QOLIE-89 items discriminated well between patients according to seizure status, psychiatric comorbidity, and working status; less well after antiepileptic drug use and neurologic comorbidity. CONCLUSIONS: In this cross-sectional survey, the Norwegian version of the QOLIE-89 was reliable and showed properties supporting construct validity, at a level comparable with the original U.S. version.  相似文献   

5.
We constructed a Chinese version of the cognitive component of the Alzheimer's Disease Assessment Scale (ADAS-Cog). In order to accommodate illiteracy, the Chinese version used pictures instead of words for assessing recall and recognition. The Chinese ADAS-Cog was administered to 125 individuals with no dementia, 127 with questionable dementia, and 77 with Alzheimer's disease (AD). Their age range was 51-92 years and their education range was 0-20 years. The Chinese ADAS-Cog had high internal consistency (Cronbach's alpha = 0.87) and very high interrater reliability (intraclass correlation coefficient, or ICC, = 0.99) and test-retest reliability (ICC = 0.96). It had high correlations with scores on the Clinical Dementia Rating Scale (Pearson's r = 0.85), the Cognitive Abilities Screening Instrument (CASI, Pearson's r = -0.88), and CASI-estimated scores on the Mini-Mental State Examination (Pearson's r = -0.85). Performance on the Chinese ADAS-Cog was uninfluenced by age or gender, nor by education level except within the low education range of 0-6 years. Its memory items were best for early detection of dementia; its language items were best for monitoring the progression of dementia. This study found that the Chinese ADAS-Cog is a good instrument for use with Chinese AD patients.  相似文献   

6.
BACKGROUND: The present study aims to develop and validate a Chinese version of the Dementia Rating Scale (DRS) for use with Chinese populations in psychogeriatric settings. METHODS: The DRS was translated into Chinese and its content validity was evaluated by an 11-member expert panel. To assess reliability and concurrent validity, 52 subjects with dementia were recruited from medical and psychogeriatric settings using purposive sampling. RESULTS: With percentage of agreement as an indicator, 28 out of 36 items (78%) had satisfactory content validity. Items with a percentage of agreement below 70% were reviewed and modified, based on the comments of the experts. The CDRS had excellent test-retest and inter-rater reliability, with intraclass correlation coefficient (ICC) at 0.94 and 0.93 respectively. Intraclass correlation coefficients ranged between 0.75 and 0.89 for the subscales. The internal consistency of the CDRS subscale, as measured by Cronbach's a, ranged from 0.57 to 0.82. The CDRS had high correlations with the Chinese Mini-mental State Examination (r = 0.80 for total score, r = 0.58 to 0.84 for subscales. CONCLUSIONS: The CDRS is a valid instrument for the assessment of dementia in Chinese-speaking subjects.  相似文献   

7.
OBJECTIVE: This study examines the psychometric properties and clinical experience in using the Mandarin translation of the Quality of Life-Alzheimer's Disease (QoL-AD) instrument in Chinese patients with dementia in Singapore. METHODS: A Mandarin version of QoL-AD was established following standard guidelines for transcultural adaptation of QoL measures. The instrument was administered to 70 patient-carer dyads; patients with severe dementia (MMSE < 10) were excluded. Reliability by internal consistency and test-retest, and construct validity by correlating the known domains of QoL-AD with validity measures for the respective domains, was performed. Guidelines for Rating Awareness Deficits (GRAD) measured patients' insight into their deficits. RESULTS: Three patients were not able to complete the QoL-AD. Internal consistency (Cronbach's alpha) was high for both patient (0.9) and carer (0.8) QoL-AD ratings, as was test-retest reliability, intraclass correlation coefficient (ICC) 0.7 and 0.8 respectively. Correlation of QoL-AD with domain measures was moderate for carer ratings (0.21 < r < 0.51) and poor for patient (-0.17 < r < 0.13). Patient self-rated QoL correlated poorly with, and was significantly higher than, carer-rated QoL. Correlation between patient and carer QoL-AD was stronger in patients with better insight (GRAD 3-4). CONCLUSIONS: The results suggest that while the Mandarin version of QoL-AD can be used reliably in our population, patients' self perceived QoL can be different from carer ratings and from objective QoL measures. The disparity can be attributed to patients' poor insight, denial, fear of "losing face," normalization and accommodation of standards with aging. The patients' lack of education and seclusion from Western cultural exposure are also contributory.  相似文献   

8.
OBJECTIVE: The aim of the study was to examine the agreement between patient reports and their proxy reports (family and care provider proxies) on Health Status in a sample of patients with dementia. METHOD: Ninety-nine patients with mild to moderate dementia and proxies completed the 38-item Nottingham Health Profile (NHP) questionnaire. RESULTS: Completion rates for the different NHP dimensions ranged from 78 to 90% for the dementia subjects. Inter-rater agreement between different proxies and subject was from moderate to good for physical assessment (ICCs from 0.54 to 0.78 for physical mobility scales). Patient/family proxy concordance was moderate to good for five out of six dimensions (physical mobility, social isolation, pain, energy, sleep) and poor for emotional reaction. Family proxies systematically reported lower functioning than did patients in the four subscales assessing: physical mobility (p <0.0001), energy (p <0.005), social isolation (p <0.01) and sleep (p <0.03). Care provider proxies only estimated physical mobility as lower (p <0.0001). CONCLUSION: Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient.  相似文献   

9.
A psychometric evaluation of a French version of the side-effects and life satisfaction inventory (SEALS) was carried out. SEALS was compared to the quality of life in epilepsy-31 questionnaire (QOLIE-31) and a generic, health-related quality-of-life questionnaire, the Nottingham health profile (NHP). The psychometric properties of SEALS, assessed in 190 adult subjects with epilepsy, included: acceptability, test-retest reliability and validity, multitrait analysis including internal consistency and item-to-scale correlations, construct validity using factor analysis and discriminative validity using associations with disease characteristics and treatment effects, and, correlations with NHP and QOLIE-31 scores for convergent and divergent validity. Both acceptability and reproducibility were good and internal consistency was high (Cronbach's alpha coefficient = 0.92). Factor analysis with varimax rotation identified five factors: the first, related to cognitive function accounted for 26.0% of the variance. Discriminative validity was good for most treatment characteristics (tolerability, seizure control, compliance) and clinical features (epilepsy type, seizure frequency and severity, depressive symptoms). Correlations with the NHP and QOLIE-31 scores were consistently strong. It was concluded that the psychometric properties of the French translation of SEALS were similar to the original English version. In addition, SEALS provides information on quality of life that is complementary to that obtained with QOLIE-31. In particular, with respect to the QOLIE-31, the SEALS provides information on cognitive and neuropsychological aspects of impairment of quality of life, whereas the QOLIE-31 has a broader scope, taking into account multiple aspects of quality of life in epilepsy.  相似文献   

10.
BACKGROUND: The aim of the present study was to evaluate the validity, reliability and responsiveness of a Swedish translation of the Quality of Life in Late-Stage Dementia (QUALID) Scale. METHOD: A total of 169 elderly residents at 19 dementia special care units in eight long-term care facilities in the Gothenburg city region participated in the study. Assessments were made by 107 proxy informants. RESULTS: Results showed satisfactory levels of internal consistency reliability (Cronbach's alpha coefficients 0.74), acceptable inter-rater reliability between informants (0.69), and high test-retest reliability (0.86). As hypothesized, QUALID scores were also associated with those from other quality-of-life (QoL) indices (criterion validity), as well as with use of psychoactive drugs, and with tests of cognitive impairment (clinical validity). The responsiveness of the questionnaire was also acceptable. CONCLUSIONS: As important clinical decisions may derive from perceived QoL effects, it is vital that the QoL data be reliable, valid and sensitive to change. Our evaluations of the psychometric properties of the Swedish QUALID indicate that it satisfactorily meets the need for an instrument to assess QoL in late-stage dementia in Sweden, in a wide range of settings and applications.  相似文献   

11.
Quality of life (QOL) of adolescents has been scarcely documented in a general population sample. The study was aimed at translating and adapting the Adolescent Duke Health Profile to Vietnamese, validating the questionnaire, determining reference value, and identifying determinants of poor QOL. Following a cross-cultural methodology, the Adolescent Duke Health Profile (ADHP) had content adapted to Vietnamese by alteration of 2 out of 17 items. Test-retest validity was checked in 408 adolescents. Construct validity and internal consistency were assessed in a 1408 probability sample of adolescents in Vietnam, and determinants were analysed by multiple linear regression. The ADHP showed satisfactory internal consistency (Cronbach's alpha=0.87-0.92) and satisfactory construct validity in relation with drug abuse or not, or with parent situation living in couple or alone. Test-retest reliability was acceptable (ICC=0.7-0.8) and major determinants were age, sex, education, chronic disease, alcohol and drug use. This works provide a validated, simple health related QOL scale suited to adolescent population with reference values. Taking into account determinants identified will help program prevention and intervention health policy and to evaluate the effect of these actions.  相似文献   

12.
No instrument for assessing impulsiveness has been developed in Japan. After translating the Barratt Impulsiveness Scale 11th version (BIS-11) into Japanese, we investigated reliability and validity in student (n = 34) and worker (n = 416) samples. To assess test-retest reliability, the intraclass coefficient between test and retest was calculated in the student sample. Internal consistency was examined by calculating Cronbach's alpha in the worker sample. To see factor validity, we examined by confirmatory factor analysis whether the three-factor model, proposed by a previous report, fit the data. The results showed that the Japanese version of the BIS-11 had excellent test-retest reliability and acceptable internal consistency reliability. In addition, the Japanese version was judged to have similar factor structure to the original one. The Japanese version of the BIS-11 is a reliable and valid measure and has possible utility for assessing impulsiveness.  相似文献   

13.
PURPOSE: We report the cultural adaptation and psychometric properties of the Quality of Life in Epilepsy-31 Inventory (QOLIE-31) for the Portuguese language and Brazilian culture. METHODS: This study involved 150 outpatients: 50 presurgical patients with refractory temporal lobe epilepsy (TLE) related to mesial temporal sclerosis (MTS), 50 patients with juvenile myoclonic epilepsy (JME), and 50 seizure-free patients with TLE. They completed the QOLIE-31, Nottingham Health Profile (NHP), Beck Depression Inventory (BDI), and Adverse Events Profile (AEP) and underwent a neuropsychological evaluation (NE). Internal consistency reliability, interrater and test-retest reliability, and construct validity were assessed. RESULTS: QOLIE-31 mean scores were 33.1 (Social Function), 68.9 (Overall Quality of Life), 56.5 (Seizure Worry), 64.1 (Emotional Well-Being), 63.7 (Energy/Fatigue), 38.9 (Cognitive Function), and 49.7 (Medication Effects). Internal consistency was high (Cronbach's alpha), as were the associations between QOLIE-31 and the BDI, NHP, AEP, and NE. CONCLUSION: The Portuguese/Brazilian version of the QOLIE-31 inventory showed good reliability, validity, and construct validity.  相似文献   

14.
Evaluation of measures used to assess quality of life after stroke   总被引:18,自引:0,他引:18  
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.  相似文献   

15.
BACKGROUND: A short, practical, and validated quality of life (QoL) scale for hemifacial spasm (HFS) is not currently available. OBJECTIVES: To examine the reliability and validity of a short self-rating scale (HFS-7) by comparing HFS patients with healthy controls. We also evaluated the correlation of HFS-7 with the physical and mental domains of SF-36, a generic QoL scale. METHODS: Seven self-rating items (HFS-7) were administered to HFS patients and healthy controls. In addition, HFS patients answered the SF-36 questionnaire. The validity and reliability of HFS-7 were analysed and correlation between HFS-7 and SF-36 examined. RESULTS: A total of 178 subjects were enrolled in the study, including 85 HFS patients with mean age of 54.8 (SD 11.0) years, of whom 52 (61.2%) were women, and 93 controls with mean age of 51.4 (SD 10.0) years, of whom 59 (63.4%) were women. The test-retest intraclass correlation coefficient for the seven items was between 0.75 and 0.90 and Cronbach's coefficient of reliability for the HFS-7 scale was 0.88. Every item in HFS-7 discriminated between disease and controls (p<0.0001). The HFS-7 summary index correlated with the SF-36 summary score (Spearman's correlation r = -0.28, p = 0.009), in particular the mental health summary score (r = -0.416, p<0.0001) and the emotional domain (r = -0.466, p<0.00001). CONCLUSION: HFS-7 could prove useful as a simple clinical tool to assess and monitor QoL measures in HFS patients.  相似文献   

16.

Background:

Aphasia, an acquired inability to understand and/or speak language, is a common repercussion of stroke that denigrates the quality of life (QOL) in the affected persons. Several languages in India experience the dearth of instruments to measure the QOL of persons with aphasia. Malayalam, the language spoken by more than 33 million people in Kerala, the southern state of India, is not an exception to this.

Objective:

This study aimed to adapt and validate the widely-used stroke-aphasia quality of life (SAQOL-39) scale to Malayalam.

Materials and Methods:

We required seven Malayalam-speaking Speech Language Pathologists (SLPs), hailing from different regions of Kerala, to examine the socio-cultural suitability of the original items in SAQOL-39 and indicate modifications, wherever necessary. Subsequently, the linguistic adaptation was performed through a forward-backward translation scheme. The socio-culturally and linguistically adapted Malayalam version was then administered on a group of 48 Malayalam-speaking persons with aphasia to examine the test-retest reliability, acceptability, as well as the internal consistency of the instrument.

Results:

The Malayalam SAQOL-39 scale showed high test-retest reliability (intraclass correlation coefficient, ICC = 0.91) as well as acceptability with minimal missing data (0.52%). Further, it yielded high internal consistency (Chronbach''s ∝ = 0.98) as well as item-to-total and inter-domain correlations.

Conclusions:

The Malayalam version of SAQOL-39 is the first socio-culturally and linguistically adapted tool to measure the QOL of persons with stroke-aphasia speaking this language. It may serve as a potential tool to measure the QOL of this population in both clinical practice and future research endeavors.  相似文献   

17.
Objectives: The aim of this study was to assess the psychometric properties and the transcultural adaptation into French of the quality-of-life in Alzheimer's disease (QoL-AD).

Methods: A total of 120 patient-proxy pairs were recruited in six French hospitals and one French-speaking Swiss hospital to take part in the study. The patients presented mild to moderate AD (MMSE ≥ 10). The QoL-AD was administered by an interviewer for patients and was self-administered for caregiver proxies. Thus, the psychometric validation enabled the study of feasibility, acceptability, reliability and convergent and discriminant validity of the instrument.

Results: The French version of the QoL-AD showed good internal consistency (Cronbach's α coefficient ≥ 0.70) and good reliability (Intra-class correlation > 0.80) at a 2-week interval, for patient and caregiver questionnaires. Convergent validity, as indicated by correlation between the QoL-AD (disease-specific instrument) and the dimensions of the Duke Health Profile (generic instrument), was also good for eight dimensions in the Duke profile (p < 0.05). Discriminant validity showed a significant difference for depression (p = 0.0025) and did not show significant difference for two groups of dementia (p = 0.11).

Conclusion: There is now a validated French version of the QoL-AD available, following transcultural adaptation according to international recommendations, which possesses good psychometric qualities.  相似文献   


18.
The objective of the study was to validate the Chinese version of The Liverpool Adverse Events Profile (LAEP) in patients with epilepsy. The scale was translated from the English version into a Chinese version and was then back-translated to examine its accuracy. Content validity, concurrent validity, and construct validity were then used to examine the overall validity of this scale. A cross-sectional design with convenience sampling was used to recruit participants from three medical centers. The LAEP Chinese version was tested with respect to validity and reliability in 357 patients with epilepsy, and another 28 patients were invited to evaluate the test-retest reliability of the scale in a 2-week interval. There was a good content validity index (CVI=1.0). Patients undergoing polytherapy had more adverse effects (χ(2)=6.10, p<0.01) and higher LAEP scores (t=-2.91, p<0.01) than patients undergoing monotherapy, indicating a good concurrent validity. Factor analysis included three factors classified by symptoms in the 22-item Chinese version of the LAEP. The total variance of these three factors was 39.3% for the scale. Internal consistency (Cronbach's α=0.92) and the intraclass correlation coefficient (ICC=0.80) were satisfactory. Moreover, the LAEP can be completed in a short time, is perceived as easy to complete, and there was no relevant information missing. The results indicated that the Chinese version of the LAEP yielded highly acceptable parameters of validity and reliability and can be used for measuring adverse effects of antiepileptic drugs among Chinese-speaking patients with epilepsy in Taiwan.  相似文献   

19.
Patients with the frontal variant of frontotemporal dementia (fv-FTD) exhibit deficits of executive functions. However, no single executive function task that might be used to detect the executive function deficits in fv-FTD patients has been established as yet. The frontal assessment battery (FAB) devised by Dubois et al. (2000) has been reported to be a quick and simple bedside screening test that is sensitive for differentiating between FTD and Alzheimer's disease (AD). The present study was conducted with the aim of ascertaining the reliability and validity of the Japanese version of the FAB among Japanese patients with fv-FTD. The Japanese version of FAB was given to patients with mild fv-FTD (n = 18) and those with AD (n = 18). The test-retest reliability was evaluated after a 3-week interval by the same interviewer. Data from the Wisconsin Card Sorting Test (Keio version: KWCST) were also collected to ascertain the validity of the FAB. The Japanese version of the FAB exhibited good internal reliability (Cronbach's alpha: 0.70, 95% confidence interval [CI] = 0.50-0.84) and good test-retest reliability (intraclass correlation coefficient: 0.89, 95%CI = 0.77-0.95). Significant correlations were observed between the total FAB score and the category achieved (r = 0.454, P < 0.05) and number of perseveration errors (number of errors that were perseverations; r = 0.719, P < 0.01) in the KWCST. A cut-off of 10 for the total FAB score yielded the highest sensitivity (85%) and specificity (92%) for discriminating between patients with fv-FTD and AD with the highest positive likelihood (12.0, 95%CI = 2.6-55.4). The Japanese version of the FAB offers promise as an easy and quick bedside screening test to distinguish fv-FTD from AD.  相似文献   

20.
PURPOSE: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. METHODS: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test-retest reliability 10-14 days apart, and documented construct validity. RESULTS: A sample of 381 children with epilepsy, age 6-15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's alpha was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test-retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate. CONCLUSIONS: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a complement to the child self-report measure in evaluating the validity of parental assessment of the child's health status; in longitudinal outcome research; and in HRQL assessment of children who are unable to respond independently.  相似文献   

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