The Serbian QOLIE-AD-48: translation, cultural adaptation, and preliminary psychometric evaluation

PURPOSE: The goals of the work described in this article were to translate and adapt into Serbian the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48), and to evaluate the psychometric properties of the translation. METHODS: Translation/backtranslation, cultural adaptation, and pretesting were performed first. For validity, internal consistency, and sensitivity testing, the Serbian version was administered to a sample of 67 adolescents with epilepsy. RESULTS: All subscales (Epilepsy Impact, Memory/Concentration, Attitudes toward Epilepsy, Physical Functioning, Stigma, Social Support, School Behavior, and Health Perceptions) contributed significantly to the summary measure. Mean scores for the subscales ranged from 75.4 to 91.3, and showed a tendency to decrease as illness severity increased. Internal consistency reliability (Cronbach's alpha) was 0.92 for the entire questionnaire. CONCLUSIONS: The QOLIE-AD-48 Serbian version is a valid and reliable instrument for health-related quality-of-life assessment in youths with epilepsy. It can be administered in 15 minutes, and can be used in clinical practice, as well as in quality-of-life research.     

Psychometric Properties of the German Translation of the QOLIE-31

The purpose of this work was to assess the psychometric properties of the German Translation of the Quality of Life in Epilepsy Inventory, QOLIE-31. Internal consistency, construct and criterion validity, and responsiveness were tested in 509 patients with epilepsy who were administered the questionnaires at application or at admittance to the epilepsy center Bethel. Construct validity was tested in patients with different seizure frequencies and different degrees of tolerability of antiepileptic drug (AED) therapy (adverse effects). The scales Epilepsy-Related Fears und Restrictions in Daily Life due to Epilepsy were used as criterion measures. Test-retest reliability (long-term stability) and responsiveness of the questionnaire were analyzed in subgroups of patients who responded to the questionnaires a second time (n = 256). Cronbach's alpha of the QOLIE-31 was 0.94 and varied between 0.76 and 0.90 for the seven subscales. The correlations of the QOLIE with Epilepsy-Related Fears and Restrictions in Daily Life revealed high correlations between Epilepsy-Related Fears and the QOLIE subscale Seizure Worry (r = 0.81, P < 0.01) and the total score (r = 0.62, P < 0.01) and between Restrictions in Daily Life and the QOLIE subscale Social Functioning (r = 0.71) and the total score (r = 0.70, P < 0.01). Seizure frequency had a significant effect especially on the QOLIE subscales Social Functioning, Seizure Worry, and Overall QOL, whereas tolerability of AED therapy affected especially the subscales Medication Effects, Overall QOL, and Energy-Fatigue. The test-retest reliability (intraclass correlation coefficient) was 0.79 for the overall score and varied between 0.59 and 0.78 for the seven subscales. The German Translation of QOLIE-31 is a reliable and valid questionnaire with which to assess QOL in patients with epilepsy and is conceptually similar to the English version. It is a sensitive questionnaire with respect to seizure frequency and tolerability of antiepileptic drug treatment.     

The Portuguese version of the Epilepsy Surgery Inventory (ESI-55): cross-cultural adaptation and evaluation of psychometric properties

The purpose of this study was to develop a Portuguese version of the Epilepsy Surgery Inventory (ESI-55) and to assess its psychometric properties. Sixty patients with temporal lobe epilepsy related to unilateral mesial temporal sclerosis who underwent presurgical evaluation at the Universidade Federal de S?o Paulo (UNIFESP) formed the sample for this study. The psychometric properties of the ESI-55 included: reliability, validity, and responsiveness. Internal consistency was high in all domains (Cronbach's alpha ranging from 0.76 for Social Function to 0.88 for Physical Function) except Overall Quality of Life (alpha=0.45). Test-retest reliability after 1 week was good, with the intraclass correlation coefficient ranging from 0.79 (Energy/Fatigue) to 0.92 (Role Limitations due to Emotional Problems). Interrater reliability ranged from 0.84 (Cognitive Function) to 0.94 (Role Limitations due to Physical Problems). For construct validity, we verified a high correlation between the ESI-55 and Health Assessment Questionnaire-8 for the Physical Function domain (Pearson linear correlation=-0.84), and a moderate correlation for the Pain domain (P=-0.58), but for the other subscales no correlation was detected. Beck Depression Inventory and ESI-55 domains were highly statistically correlated (ANOVA: P<0.005), but there was no association of the Cognitive Function and Role Limitations due to Memory Problems subscales with neuropsychological evaluation (Pearson coefficient: P>0.05). With respect to demographic characteristics, a statistically significant correlation was observed for the variable educational level (Student t, P<0.005) and ESI-55 scores. There was a high correlation between seizure frequency and ESI-55 domains for clinical variables (ANOVA, P<0.005). Surgical treatment in this series improved health-related quality of life in the seizure-free group in three domains--Health Perception (1.24), Emotional Well-Being (1.32), and Energy/Fatigue (1.48)-as reflected by the standard response mean and the effect size of the sample. Our results support the psychometric properties of the Portuguese version of the ESI-55 as a measure of health-related quality of life.     

Quality of life in multiple sclerosis patients in Spain

OBJECTIVE: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. METHODS: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. RESULTS: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach's alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. CONCLUSIONS: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.     

Health-related quality of life in adolescents with well-controlled epilepsy

OBJECTIVE: The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescents with well-controlled epilepsy. METHODS: The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncomplicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, Epilepsy Impact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. In addition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL. RESULTS: The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Functioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions in the Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL. CONCLUSIONS: Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their best adjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurring were predictors of HRQOL in this group.     

Psychometric properties of the Czech version of the Quality of Life in Epilepsy Inventory (QOLIE-31)

The aim of this work was to assess the psychometric properties of the Czech version of the Quality of Life in Epilepsy Inventory (QOLIE-31). The study population comprised 221 patients with epilepsy who were administered the questionnaires during their regular visit to the Neurology Clinic of the University Hospital Hradec Kralove. Internal consistency (Cronbach's alpha) and validity using factor analysis were tested to detect similarities to and differences from the original version. Validity testing was completed by analysis of variance (ANOVA) of QOLIE-31 scores against seizure frequency. The internal consistency of each subscale of the QOLIE-31 was above the accepted standard of 0.7, except for Overall Quality of Life. Cronbach's alpha for the QOLIE-31 was 0.70 and varied between 0.68 and 0.89 for the seven subscales. Factor analysis of the 30 items yielded seven factors. The first factor was more heterogeneous, containing high loadings from four of the five items constituting Emotional Well-Being and three of the four items constituting Energy/Fatigue. Seizure Worry and Medication Effects were confirmed as single factors, whereas the assignment of the items in Social Functioning was not satisfactory. The seventh single factor consisted of the item "driving" from the Social Functioning subscale. Seizure frequency had a significant effect on all QOLIE-31 subscales and Overall score. Except for Social Functioning, the psychometric properties of the Czech version of the QOLIE-31 are good and similar to those of the original English version. The Czech version thus meets established psychometric criteria for validity and reliability.     

Evaluation of a WMS-R Malingering Index in a Non-Litigating Clinical Sample

The purpose of this study was to examine the prevalence of a Wechsler Memory Scale-Revised “malingering index” in a large sample of non-litigating individuals from an inpatient substance abuse program. Past research has demonstrated that experimental-malingerers often obtain substantially lower scores on the Attention/Concentration Index than on the General Memory Index. In the present study, only a small percentage of patients showed large General Memory – Attention/Concentration difference scores. These results provide further support for the validity of this difference score as a marker for non-optimal effort.     

Evaluation of a WMS-R malingering index in a non-litigating clinical sample

The purpose of this study was to examine the prevalence of a Wechsler Memory Scale-Revised "malingering index" in a large sample of non-litigating individuals from an inpatient substance abuse program. Past research has demonstrated that experimental-malingerers often obtain substantially lower scores on the Attention/Concentration Index than on the General Memory Index. In the present study, only a small percentage of patients showed large General Memory - Attention/Concentration difference scores. These results provide further support for the validity of this difference score as a marker for non-optimal effort.     

Validity and reliability of the Portuguese version of the quality of life in epilepsy inventory (QOLIE-31) for Brazil

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.     

Worry About Cancer Progression and Low Perceived Social Support: Implications for Quality of Life Among Early-Stage Breast Cancer Patients

Background

Worry about cancer progression and perceived social support can affect cancer survivors’ quality of life (QOL).

Methods

In 480 early-stage breast cancer survivors, we examined how worry about cancer progression and perceived social support 6 months after definitive surgery were associated with QOL (RAND 36-item Health Survey) at 6-, 12-, and 24-month follow-up.

Results

At 6 months post-surgery, higher worry was associated with worse QOL for five of eight subscales. Lower social support was associated with worse QOL for four subscales. The negative effects of worry and limited social support dissipated for four subscales (worry) and two subscales (social support) by 12-month follow-up and for all subscales by 24-month follow-up. Social support at 6 months moderated the relationship between T2 worry and T4 emotional well-being; post hoc tests did not clarify the nature of the interaction.

Conclusion

Early-stage breast cancer survivors who worry about cancer progression and/or have low social support may experience lower levels of QOL that can take several months to resolve.     

Neuropsychological outcomes after Gamma Knife radiosurgery for mesial temporal lobe epilepsy: a prospective multicenter study

Purpose: To assess outcomes of language, verbal memory, cognitive efficiency and mental flexibility, mood, and quality of life (QOL) in a prospective, multicenter pilot study of Gamma Knife radiosurgery (RS) for mesial temporal lobe epilepsy (MTLE). Methods: RS, randomized to 20 Gy or 24 Gy comprising 5.5–7.5 ml at the 50% isodose volume, was performed on mesial temporal structures of patients with unilateral MTLE. Neuropsychological evaluations were performed at preoperative baseline, and mean change scores were described at 12 and 24 months postoperatively. QOL data were also available at 36 months. Key Findings: Thirty patients were treated and 26 were available for the final 24‐month neuropsychological evaluation. Language (Boston Naming Test), verbal memory (California Verbal Learning Test and Logical Memory subtest of the Wechsler Memory Scale‐Revised), cognitive efficiency and mental flexibility (Trail Making Test), and mood (Beck Depression Inventory) did not differ from baseline. QOL scores improved at 24 and 36 months, with those patients attaining seizure remission by month 24s accounting for the majority of the improvement. Significance: The serial changes in cognitive outcomes, mood, and QOL are unremarkable following RS for MTLE. RS may provide an alternative to open surgery, especially in those patients at risk of cognitive impairment or who desire a noninvasive alternative to open surgery.     

Effects of levetiracetam as an add-on therapy on cognitive function and quality of life in patients with refractory partial seizures

This study comprised two phases and evaluated the effects of levetiracetam (LEV), as an add-on treatment, on cognitive function and quality of life (QOL) in patients with refractory partial seizures. The short-term phase employed a randomized, double-blind, placebo-controlled design including an 8-week baseline period, 4-week titration interval, and 12-week period at the maximum LEV dose (1500 mg twice daily). The long-term phase was an open-label study in which the maximum LEV dose was administered for another 24 weeks. Neuropsychological tests and the 31-item Quality of Life in Epilepsy (QOLIE-31) inventory were administered at baseline, at the end of the short-term phase, and at the end of the long-term phase. Twenty-four eligible patients entered into the final phase. After short-term LEV treatment, performance time on the Wisconsin Card Sorting Test (WCST) and Delayed Logic Memory significantly improved for the patient group, but not the control group. Subscale scores on the QOLIE-31, including scores on Cognitive Functioning and Social Function, also improved only for the LEV group. At the end of the long-term phase, these improvements were maintained, and both groups performed better in more areas, as measured by the Trail Making Test, WCST, and Delayed Visual Memory in the neuropsychological battery and the QOLIE-31 subscales Overall QOL and Health Status. Thus, as an adjunctive therapy, LEV did not negatively affect and, in a way, improved cognitive function and QOL in patients with medically refractory partial seizures. Some of these improvements may be maintained during long-term treatment.     

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.     

Cognitive functioning related to quality of life in schizophrenia

The present study compared the cognitive function of patients with schizophrenia to that of healthy subjects, and investigated the relationships between cognitive function and quality of life (QOL). Participants consisted of 53 patients meeting DSM-IV criteria for schizophrenia and 31 normal controls. All participants completed a neuropsychological test battery assessing executive function, verbal memory, and social knowledge. QOL was rated using the Schizophrenia Quality of Life Scale. Patients with schizophrenia showed lower performance across various cognitive measures of memory, including the Sentence Memory Test, the Verbal Learning Test, and the Script Test, as well as the Rule Shift Cards Test of executive function. Multiple regression analyses were used to evaluate the neuropsychological measures and clinical symptoms to predict QOL. The QOL total score, the social initiative score or the empathy score were significantly predicted by the Script or/and the Sentence Memory. Neuropsychological functioning was unrelated to most QOL scores in the presence of clinical symptoms, while ability of empathy in the QOL was predicted by performance of the Sentence Memory Test. These results demonstrated patients with schizophrenia have deficits in executive function, memory and learning, and social knowledge, and that social knowledge and memory are related to QOL. Thus, in patients with schizophrenia, deficits in social knowledge appear to be associated with current QOL in general, and specifically with the capacity for empathy and social initiative.     

Development and Cross-Cultural Translations of a 31-Item Quality of Life in Epilepsy Inventory

Summary: Purpose: We report the development of a questionnaire to assess health-related quality of-life (HRQOL) in people with epilepsy and the process of cross-cultural translations of the questionnaire.
Methods: A sample of 304 adults with epilepsy from 25 seizure clinics in the United States was used to derive an abbreviated questionnaire focusing on epilepsy-related issues from a longer, 89-item instrument (QOLIE-89). A rigorous forward-backward-forward system was used for cross-cultural translation.
Results: A 31-item questionnaire (QOLIE-31, version 1.0) resulted, comprising seven subscales covering genral and epilepsy-specific domains. Subscale and total scores can be calculated. The subscales were grouped into two factors: Emotional/Psychological Effects (seizure worry, overall QOL, emotional well-being, energy/fatigue subscales) and Medical/Social Effects (medication effects, work-driving-social limits, cognitive function subscales). Cross-cultural translations were made from U.S.-English into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and U.K. English Versions 1.1.
Conclusions: Our results support the reliability and validity of the QOLIE-31 (U.S.-English version 1.0) as a measure of HRQOLIE. Cross-cultural translations into nine other languages make it feasible to use the QOLIE-31 (version 1.1) in multinational clinical trials after validation in each population or concurrent with clinical trial.     

QUALIDEM: development and evaluation of a dementia specific quality of life instrument--validation

OBJECTIVE: To validate the QUALIDEM, a quality of life measure for people with dementia within residential settings rated by professional caregivers. METHOD: In a sample of 202 residents of nursing homes Spearman rank correlations were calculated between the QUALIDEM subscales aand indices of convergent validity and discriminant validity, with dementia severity and need of care, with global QOL scores by the head nurse and family, and with self-report on COOP/WONCA Charts. RESULTS: The one-method multi-trait matrix showed 90.5% of the correlations to be in support for convergent and discriminant validity. Low to moderate correlations were observed with dementia severity and need of care, confirming that QOL is not merely disease severity. Support for concurrent validity was found in correlations with QOL ratings by the head nurse. The QUALIDEM did not correlate with most of the family ratings or with the COOP/WONCA Charts. CONCLUSION: The results of this validation study together with the obtained content validity through the method of construction provide sufficient support for validity of the QUALIDEM to be used for care evaluation and research in residential settings.     

Quality of life in children with epilepsy

Background:

Epilepsy is a chronic medical condition with many co-morbid features. It has been observed that children with epilepsy (CWE) have a compromised quality of life (QOL).

Objective:

To assess the QOL in CWE and to study the various factors affecting QOL among CWE.

Materials and Methods:

The sample consisted of 102 CWE aged 5–15 years of either sex. QOL was measured by Quality of Life in Childhood Epilepsy (QOLCE) questionnaire, a 76-item, parent-reported questionnaire. Cronbach alpha was used to determine the internal consistency of the subscales and Pearson correlation to determine construct validity. The t-test and analysis of variance were used to compare mean QOLCE scores.

Results:

Factors affecting QOL included age, place of residence, socioeconomic condition, maternal education, seizure type and frequency and number of antiepileptic drugs.

Conclusion:

CWE have a relatively compromised QOL and comprehensive care needs to go beyond the attempt of controlling seizures.     

Botulinum toxin improves quality of life in hemifacial spasm: validation of a questionnaire (HFS-30)

BACKGROUND: Hemifacial spasm (HFS) can be disabling and affect quality of life. There is a lack of a validated scale for evaluating botulinum toxin (BTX) response in HFS. OBJECTIVE: We examined the validity and reliability of a self-rating health-related quality of life (HRQOL) questionnaire (HFS-30) in HFS and investigated the correlation of this questionnaire with the neurologists' assessment of severity of HFS and response to botulinum toxin (BTX) treatment. METHODS: HFS patients were asked to answer a total of 30 self-rating questions divided into seven subscales: Mobility; Activities of Daily Living (ADL); Emotional Well-being; Stigma; Social support; Cognition; and Communication. All of the items were scored on a 5-point scales ranging from 0 ("never") to 4 ("always"). They were also asked to assess their response to the BTX treatment based on a similar questionnaire at 6-8 weeks after BTX. The validity, reliability and sensitivity of the questionnaire were analyzed statistically. RESULTS: There were 80 HFS patients with mean age of 56.3+/-11.1 (S.D.) years (range 35 to 81), consisting of 54 (67.5%) females, 26 (32.5%) males. The intraclass correlation coefficient (ICC) and Cronbach's alpha were more than 0.7 for the majority of the items and subscales, respectively. There was a good positive correlation of severity of HFS with the subscale scores. Regression analysis of physicians' assessment of response to BTX on change in scores from baseline as rated by patients demonstrated a significant correlation. CONCLUSIONS: We demonstrated validity, reliability and sensitivity of the HFS-30 questionnaire. BTX improves quality of life in HFS.     

Predictors of subjective and objective quality of life in outpatients with schizophrenia

Aim: In recent years, greater attention has been given to quality of life (QOL) in schizophrenia and several studies reported that negative and depressive symptoms and cognitive dysfunction are related to patient QOL. But because a variety of QOL measures have been used in the previous studies, there seems to be no unanimous predictors for subjective and objective QOL. The purpose of the present study was to elucidate the relationship between clinical variables and subjective and objective QOL in outpatients with schizophrenia, using schizophrenia disease‐specific QOL measures. Particular attention was paid to cognitive function as a predictor of QOL. Methods: Schizophrenia symptoms of the Positive and Negative Syndrome Scale (PANSS) were divided into five factors: positive factor, negative factor, cognitive factor, emotional discomfort, and hostility. The study sample consisted of 84 schizophrenia outpatients. Subjective and objective QOL were assessed with Schizophrenia Quality of Life Scale (SQLS) and the Quality of Life Scale (QLS), respectively. Results: Subjective QOL correlated significantly with emotional discomfort, positive factor, negative factor, extrapyramidal symptoms and cognitive factor, while objective QOL correlated with negative factor, cognitive factor, emotional discomfort, extrapyramidal symptoms, and dose of antipsychotics. Total score and three of four subscales in the QLS correlated significantly with cognitive factor, while cognitive factor had a significant correlation with only one of three scales of SQLS. Stepwise regression showed that subjective QOL was significantly predicted by emotional discomfort and extrapyramidal symptoms, while negative factor was the most important predictor of objective QOL. Conclusion: Cognitive dysfunction had a greater influence on objective QOL than subjective QOL. Treating depressive and negative symptoms and extrapyramidal symptoms might contribute to enhanced subjective and objective QOL.     

Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures

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.