Validity and reliability of the Italian version of the Quality-of-Life in Epilepsy Inventory (QOLIE-31).

PURPOSE: To develop an Italian adaptation of the shortened version of the Quality-of-Life in Epilepsy Inventory (QOLIE-31). METHODS: The study population comprised 503 consecutive ambulatory patients with epilepsy from 44 centers. Internal validity was tested by factor analysis, to detect similarities to and differences from the original version, and by multitrait/multi-item analysis, to assess item convergent and discriminant validity. External validity testing included correlation to the SF-36 Inventory, to check the properties of the epilepsy-specific dimensions. Validity testing was completed by analysis of variance (ANOVA) of QOLIE-31 dimension scores against demographic and clinical variables, including age, sex, seizure frequency and number of drugs. RESULTS: The domains showing the highest internal consistency and the best discriminant validity were Medication effect, and Seizure worry. Social functioning had the lower discriminant validity. With reference to the SF-36 scores, the study patients were slightly but constantly below the population values, mostly for General health and Role physical domains. All QOLIE-31 dimensions were sensitive to almost any demographic and clinical variable, except for Medication effects (sensitive to number of drugs) and Energy-fatigue (sensitive to age). CONCLUSIONS: Except for Social functioning, the psychometric properties of the Italian adaptation of the QOLIE-31 Inventory are fairly good and similar to the American version and the Spanish translation. Social functioning scale suffers shortcomings because of life constraints caused by epilepsy (with missing values for regular job and driving license).     

Clinical Uses of the Quality-of-Life in Epilepsy Inventory

Summary: The quality-of-life in epilepsy (QOLIE) inventory was designed to assess adult epilepsy patients. Responses to a draft 99-question inventory administered to patients with low to moderate seizure frequency will be used to generate two or three separate instruments. The largest and most comprehensive of these will serve as a research tool for investigators and may be helpful in designing studies that compare the effects of approved or investigational antiepileptic drugs. This instrument may also be useful in documenting patient outcomes following expensive diagnostic studies, such as video-electroencephalogram monitoring, or other therapeutic interventions, such as epilepsy surgery. An intermediate-sized instrument may serve as a clinical tool for neurologists and epileptologists. A brief instrument may serve as a quick clinical survey for primary care physicians, neurologists, and specialists in epileptology. The abbreviated clinical inventories are intended to provide rapid assessment of quality-of-life issues in the office setting. Such assessments can help physicians and patients identify previously unrecognized problems and may lead to changes in care.     

A Brief Questionnaire to Screen for Quality of Life in Epilepsy The QOLIE-10

Summary: Purpose : To evaluate a brief questionnaire to screen aspects of health-related quality of life for persons with epilepsy.
Methods : A study of 304 adults with epilepsy was undertaken at 25 seizure clinics in the United States. It was used for derivation of a brief screening tool from a longer instrument (QOLIE-89).
Results : The 10–item questionnaire (QOLIE-10) covers general and epilepsy-specific domains, grouped into three factors: Epilepsy Effects (memory, physical effects, and mental effects of medication), Mental Health (energy, depression, overall quality of life), and Role Functioning (seizure worry, work, driving, social limits). Scale scores were significantly different among seizure groups (p = 0.003).
Conclusions : The QOLIE-10 can be completed by a patient in several minutes and reviewed rapidly by the physician. This screening tool could provide potentially useful information for initial assessment or follow-up of problem areas that are not commonly evaluated during routine clinical visits with patients with epilepsy.     

Telephone Validation of the Quality of Life in Epilepsy Inventory-89 (QOLIE-89)

Summary: Purpose: To assess the psychometric properties of the Quality of Life in Epilepsy Inventory-89 (QOLIE-89) administered via telephone and to compare these properties with data gathered through self-administration.
Methods: A study of 139 patients with epilepsy was undertaken at three clinical sites in the United States. Patients participated in both telephone interview (T) and self-administration (S). Order effect was controlled through randomization (T-S and S-T). Twenty-eight S-T subjects participated in an assessment of the 2-week reproducibility of telephone interviews.
Results: Internal consistency and test-retest reliability levels of the QOLIE-89 overall score were very high across method of administration (T = 0.98; S = 0.98; ICC of T = 0.96). Scores were significantly related to mood (Profile of Mood States, r = -0.76, for both methods, p > 0.001) and two indicators of epilepsy severity (seizure frequency in the past month, T: r = 0.52, p > 0.0001; S: r = 0.54, p > 0.0001; days since last seizure, T: r = 0.28, p > 0.001; S: r = 0.25, p > 0.01), with no significant differences in coefficients by method of administration. Performance of the measure was consistent for patients with unimpaired and impaired memory, using the River-mead Behavioural Memory Test, and across level of education.
Conclusions: Results of this study indicate telephone interview is a viable option for evaluating HRQL in persons with epilepsy and support the reliability and validity of the QOLIE-89 regardless of method of administration.     

Research Use of the New Quality-of-Life in Epilepsy Inventory

Summary: Epilepsy is a heterogeneous disease with variable onset and prognosis. In general, patients with epilepsy have neuropsychological impairments. Their educational and occupational achievements may be lower than might be expected for their level of cognition. Some epilepsy patients suffer emotional distress, interictal behavioral disorders, and extreme social isolation. It is obvious that epilepsy and its sequelae impact on the patient's quality of life. What is not clear is the degree to which different factors contribute and the causes for extreme variance across patients. For example, the patients' perceptions of their disease affects quality of life more than actual seizure severity, but the mechanisms underlying this effect are not known. Quality-of-life research in epilepsy is in its infancy. In the future, such research will play an important role in assessing patient suffering, demonstrating the efficacy of treatments and interventions, and influencing medical economic decisions.     

New Quality-of-Life Inventory for Epilepsy Patients: Interim Results

Summary: The process for developing and evaluating a comprehensive, self-report measure of quality of life in epilepsy (QOLIE) is described, and interim results for 64 patients are reported. A test battery of 98 quality-of-life items was constructed with use of the RAND 36-Item Health Survey as a generic core and adding other quality-of-life items, the latter derived from a literature review and expert opinion on areas of importance to people with mild to moderate epilepsy. Seventeen scales tapping unique quality-of-life dimensions were identified from this QOLIE test battery. The battery was administered to 64 adults with mild to moderate epilepsy and their proxies (relative or close friend) on two separate visits 2–3 weeks apart. Patients also completed a neuropsychological test battery on the first visit. Interim analysis of these data demonstrated that 16 of 17 scales on the QOLIE test battery are sufficiently reliable for group comparison: Cronbach's alpha for the 16 scales ranged from 0.73 to 0.88; test-retest reliability ranged from 0.56 to 0.88. Preliminary evaluation of validity confirmed hypothesized correlations between selected QOLIE scales and Profile of Mood State scales. Correlations between patient and proxy scores ranged from 0.29 to 0.69 (all statistically significant at p < 0.005). A more detailed, final analysis of data for over 300 patients currently enrolled in the study will be published later.     

Reliability and validity of a Norwegian version of the quality of life in epilepsy inventory (QOLIE-89)

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.     

Validity and Reliability of the Greek Version of the Multiple Sclerosis International Quality-of-Life Questionnaire

Background and Purpose

There are no data regarding psychometrically validated, health-related quality-of-life instruments designed specifically for patients with multiple sclerosis (MS) in Greece. Recently, the MS International Quality-of-Life questionnaire (MusiQoL), a multidimensional, self-administered questionnaire, which is available in 14 languages (including Greek), has been validated using a large international sample. We investigated the validity and reliability of the Greek version of the MusiQoL.

Methods

Consecutive patients with different types and severities of MS were recruited from two tertiary-care centers in Greece. All patients completed the MusiQoL, the Short-Form-36 quality-of-life questionnaire (SF-36), and a symptom checklist at baseline and 21±7 days (mean±SD) later. Data regarding sociodemographic status, MS history, and functional outcome were also collected prospectively. Construct validity, internal consistency, reproducibility, and external consistency were tested.

Results

A total of 92 patients was evaluated. The construct validity was confirmed in terms of satisfactory item-internal consistency correlations and scaling success (87.5-100%) of item-discriminant validity. The dimensions of the MusiQoL exhibited high internal consistency (Cronbach''s alpha: 0.63-0.96), and reproducibility was satisfactory (intraclass correlation coefficients: 0.69-0.99). External validity testing indicated that the MusiQoL correlated significantly with all SF-36 dimension scores (Spearman''s correlation: 0.43-0.76).

Conclusions

The Greek version of the MusiQoL appears to be a valid and reliable instrument for measuring quality of life in Greek MS patients.     

The Reliability and Validity of the Korean Version of the Child Sexual Behavior Inventory

Objective

This study examined the reliability and validity of the Korean version of the Child Sexual Behavior Inventory (CSBI) in Korean children aged from 6 to 12 years old and the suitability of and potential for clinical application of the CSBI in Korean population.

Methods

The participants consisted of 158 typically growing children and 122 sexually abused children. The subjects were evaluated using the Korean version of the Child Sexual Behavior Inventory (CSBI), the Child Behavior Checklist (CBCL), and the Trauma Symptom Checklist for Young Children (TSCYC). Internal consistency was examined as a measure of reliability. To investigate the concurrent validity, Pearson''s correlations were calculated. One-way ANCOVA was used to demonstrate discriminant validity.

Results

The Cronbach''s α value was 0.84. The CSBI total score was moderately correlated with the CBCL subscales and mildly correlated with the sexual concern subscale of the TSCYC. The total score of the CSBI for the sexually abused children group was significantly higher than that of typically growing children group.

Conclusion

This study demonstrated that the Korean version of the Child Sexual Abuse Inventory (CSBI) is a reliable and valid tool. It can be applied in the clinical field for assessing the sexual behavior of Korean children aged from 6 to 12 who are suspected to have been sexually abused.     

Development of the Quality of Life in Epilepsy Inventory

Summary: We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1–91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.     

Outcome Assessment in Epilepsy: Comparative Responsiveness of Quality of Life and Psychosocial Instruments

Summary: Purpose: Few data exist on the ability of instruments to detect within-patient change over time in epilepsy, a property referred to as responsiveness. Our aim was to compare the responsiveness of three instruments [i.e., Epilepsy Surgery Inventory-55 (ESI-55) and Washington Psychosocial Inventory (WPSI), both epilepsy specific, and Symptom Checklist-90–Revised (SCL-90–R), non-epilepsy specific]. Methods: Instruments were administered at baseline and at 1 year in a prospective cohort of surgically (43) and medically (14) treated patients with temporal lobe epilepsy. Coefficient of Responsiveness and relative efficiency were computed for each scale and for the dimensions of mental health, physical health, and role function. Results: The ESI-55 contained the most responsive scales, whereas SCL-90–R contained the largest number of scales with moderate responsiveness. The largest number of scales with low responsiveness belonged to the WPSI. Sensitivity to between-treatment differences in change was highest for ESI-55 and SCL-90–R. The most efficient scales in detecting differences between treatment groups in the mental, physical, and role-function dimensions were ESI-55 emotional well-being, ESI-55 health perceptions, and SCL-90–R hostility, respectively. Conclusions: Our results support the responsiveness of ESI-55 scales and suggest that SCL-90–R is a responsive tool for the assessment of psychologic function and distress in epilepsy. Comparatively, WPSI is relatively unresponsive to small or medium-size changes.     

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.     

Reliability and validity of a Chinese version of the Quality of Life in Epilepsy Inventory (QOLIE-89)

OBJECTIVE: The aim of the work described here was to develop and validate a Chinese version of the Quality of Life in Epilepsy Inventory-89 (QOLIE-89). METHODS: The original English version of the QOLIE-89 was adapted to the Chinese language through a translation-retranslation procedure. The inventory was then completed by 293 adult patients with epilepsy. Forty patients also completed the Chinese version of the QOLIE-31. Test-retest and internal consistency reliabilities, criterion validity, and discriminative validity were assessed. RESULTS: Test-retest reliability (Pearson's correlation coefficient) for the Chinese version of the QOLIE-89 ranged from 0.70 to 0.98, and internal consistency reliability (Cronbach's alpha) ranged from 0.70 to 0.99. Spearman's rank correlation between the total scores on the Chinese versions of the QOLIE-89 and QOLIE-31 was 0.97, and domain scores ranged from 0.86 to 1.00. QOLIE-89 items could be used to discriminate between patients with respect to epileptic seizure severity and antiepileptic drug side effects. CONCLUSION: The psychometric properties of the Chinese version of the QOLIE-89 are good and similar to those of the American version and can be applied to assess quality of life in adult patients with epilepsy in China.     

Epilepsy surgery in tuberous sclerosis complex: Emphasis on surgical candidate and neuropsychology

Purpose: To discuss neuropsychological outcome and candidate of epilepsy surgery for tuberous sclerosis complex (TSC). Methods: To retrospectively analyze clinical data of 25 patients with TSC and epilepsy who underwent epilepsy surgery between 2001 and 2007. Seizure reduction was analyzed at 1‐year (1FU), 2‐year (2FU), and 5‐year (5FU) follow‐up visits after surgery, and outcomes of intelligence quotient (IQ) and quality of life (QOL) were evaluated at 2FU. Results: Resective procedures included 14 tuber resections, 9 lobectomies, and 2 tuber resections and lobectomies. Corpus callosotomies (CCTs) were performed as the adjunctive approach in eight cases with low IQ and behavioral problems. The percentages of seizure‐free cases were 72% at 1FU, 60% at 2FU, and 54.5% at 5FU, and the factors predicting seizure freedom included the course of seizures and ages of patients. Significant improvement was found in performance IQ in patients with preoperative low IQ or CCT. Significant improvement in mean QOL score was observed in all patients, especially patients with preoperative low IQ and CCT but postoperative seizure freedom. Conclusion: To be surgical candidates, patients with TSC and epilepsy should have identified epileptogenic tubers, and candidates should include patients with low IQ and multiple epileptogenic tubers. Satisfactory seizure control was often achieved with early operation, whereas improved QOL was observed frequently in postoperative seizure‐free patients. CCT could be performed as an adjunctive approach to resective operation for TSC patients with epilepsy and low IQ and render improvement of performance IQ and QOL.     

The Development and Standardization of a Spanish Version of the Washington Psychosocial Seizure Inventory

The Washington Psychosocial Seizure Inventory (WPSI) was translated from English into Spanish, reviewed by a bilingual panel, and then standardized on 107 Spanish-speakers and 45 bilinguals in Miami, Florida. The 152 subjects were active clients of the Epilepsy Foundation of South Florida. Subjects were assigned to one of three treatment groups: Monolingual (Spanish WPSI only), Bilingual (Spanish WPSI first), or Bilingual (English WPSI first). All three groups were given two administrations of the WPSI at least 30 days apart. Resulting data were submitted to measures of split-half reliability, test-retest reliability, and concurrent validity. The psychosocial scales were found to be internally consistent and showed stability across administrations with a marked similarity between the Spanish and English forms. The concurrent validity of the Spanish scales was established at the 0.01 level of significance or better. It was concluded that the Spanish WPSI was statistically comparable to the original English language version, thus establishing a basis for its usage in the psychological assessment of Spanish-speaking epileptics throughout the world.     

Quality of Life after Epilepsy Surgery in Korea

Background and purpose

Temporal changes in the quality of life (QOL) and the underlying factors after epilepsy surgery might be specific to Korea, where social stigma toward patients with epilepsy is still pronounced.

Methods

The seizure characteristics, number of antiepileptic drugs (AEDs), and the presence of stigma, anxiety, and depression were assessed before and after surgery (at 6 months and around 2 years) in 32 surgery patients and 32 nonsurgery patients. The QOL was compared between these groups using the Epilepsy Surgery Inventory-55 questionnaire. The factors affecting QOL were also evaluated.

Results

The scores in the mental, physical, and role-functioning domains were significantly higher at 6 months (all p<0.01) and around 2 years (all p<0.01) than at baseline in the surgery group but not in the nonsurgery group. The factors related to QOL differed at the two follow-up times, with seizure freedom being important at 6 months, and AEDs and depression being important at around 2 years.

Conclusions

A marked increase in QOL in our population was observed after epilepsy surgery. Although the small sample limits the interpretation of the results, the QOL change in our surgery patients shows similar trends to those reported in Western countries. A full understanding of underlying factors related to QOL might aid the development of optimal strategies for improving the long-term postsurgery QOL in this population.     

Quality of Life and Personality in Adults with Epilepsy

Summary: Purpose: This study was undertaken to understand the quality of life, personality, and associated factors in patients with epilepsy.
Methods: 117 patients with epilepsy and 84 healthy people were studied and tested using the Social Support Scale, the General Well-being Schedule, the Life-Event Scale, the Behavior Pattern Scale, and the Eysenck Personality Questionnaire WQ).
Results: There were no significant differences between the patients with epilepsy and the control group in the Social Support Scale results. The General Well-being Schedule scores were lower for the case patients than for the control group (p < 0.01). Scores for patients with frequent seizures (once a month or more) were lower than those without frequent seizures (less than once per month). The case patients had higher negative scores in the family-related problem section of the Life Events Scale, compared with the control group (p < 0.05). The patients with epilepsy were also more likely to lie (p < 0.05); their emotions were more changeable (p < 0.01), and their character more introverted (p < 0.05), although their behavior patterns were similar to the controls. We also studied associated factors related to personality, general well-being, and familial-negative life-events.
Conclusions: These results provide information about patients with epilepsy that may be useful in their psychological treatment.