Risk factors for poor health-related quality of life in adolescents with epilepsy

PURPOSE: To examine potential risk factors for poor health-related quality of life (HRQOL) among adolescents with epilepsy by using the newly developed QOLIE-AD-48. Risk factors were derived from sociodemographic, social, academic, and epilepsy- and health-related domains. METHODS: The QOLIE-AD-48 was administered to 197 English-speaking adolescents (age 11-17 years from >20 sites in the United States and in Canada). The self-report instrument yields an overall HRQOL score and eight subscale scores. Other data were obtained from family interviews, physician reports, and health records. Multiple regression analyses were conducted to study risk factors for impairment of HRQOL. RESULTS: Older adolescents (age 14-17 years), those with more severe epilepsy and more symptoms of neurotoxicity, and those living in households with lower socioeconomic status were more likely to report poor overall HRQOL. Risk factors in the eight HRQOL domains were found as follows: (a) Epilepsy Impact: older age in adolescence, more severe epilepsy and neurotoxicity, more hospitalizations during the past year, and fewer hours of extracurricular activities; (b) Memory and Concentration: longer duration of epilepsy, special education classes, and history of repeating a grade in school; (c) Attitude Toward Illness: older age, female gender, and more severe epilepsy and neurotoxicity; (d) Social Support: younger age, male gender, and fewer hospitalizations in the last year; (e) Stigma: lower socioeconomic status and special-education classes; and (f) Health Perceptions: older age, female gender, and lower socioeconomic status. None of the factors examined was significantly associated with HRQOL in (g) Physical Functioning or (h) School Behavior subscales. CONCLUSIONS: We identified several risk factors for poor HRQOL outcomes in adolescents with epilepsy. Age, increased seizure severity, and neurotoxicity were most consistently associated with poor HRQOL across domains. Older adolescents, independent of epilepsy severity, reported worse overall HRQOL than did their younger counterparts. Older adolescents also were more likely to perceive a greater negative impact on life and general health, and had more negative attitudes toward epilepsy. Adolescent boys and girls may show different sensitivities to various quality-of-life domains.     

Health-related quality of life outcome in medically refractory epilepsy treated with anterior temporal lobectomy

PURPOSE: A prospective study to investigate health-related quality of life (HRQOL) outcome in patients with temporal lobe epilepsy treated with anterior temporal lobectomy (ATL). METHODS: The majority of the patients with medically refractory focal epilepsy had Quality of Life in Epilepsy-89 (QOLIE-89) assessment at the time of prolonged video/EEG monitoring as part of their presurgical evaluation. Thirty-seven patients who were not treated surgically constituted the control group, and 53 patients who underwent ATL made up the surgery group. Both control and surgery groups had HRQOL assessment repeated at approximately 1-and 2-year intervals. Repeated measures analysis of variance (ANOVA) was used to test for differences between the two groups. RESULTS: For the overall score and almost every scale, the surgery group had a higher baseline mean than the control group. Because of this baseline difference, change scores were used in further analysis. The overall score and 10 of 17 scales in QOLIE-89 showed significant HRQOL improvement after ATL, and the improvement was significant relative to score changes of the nonsurgical comparison group. Scores improved in overall QOL, emotional well-being, attention/concentration, language, social isolation, health perception, role limitations-physical, work/drive/social, health discouragement, and seizure worry. For the first five scales, there was group-time interaction; the improvement was significantly more on the 2-year than on the 1-year follow-up. When the surgery patients were divided into four categories (class IA-, completely seizure free; class IA+, seizure free with aura; class II, rare seizures; class III, worthwhile improvement in seizure control; and class IV, no improvement), the improved HRQOL in the surgery group was almost entirely contributed by the class IA- outcome patients who were totally seizure free. The class IA+ patients with continuing aurae and class II/III/IV patients had no significant improvement in their overall HRQOL scores at 1-or 2-year follow-up. CONCLUSIONS: Overall score and 10 of the 17 scales of QOLIE-89 significantly improved in patients with medically refractory temporal lobe epilepsy after ATL. For some scales, there was delay in the improvement to manifest. The HRQOL improvement was related to achieving an entirely seizure-free status (i.e., no seizures or aurae postoperatively).     

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.     

Seizure reduction and quality of life improvements in people with epilepsy

PURPOSE: Previous research suggests that seizure freedom may be necessary to improve health-related quality of life (HRQOL) for epilepsy surgery patients, but little is known regarding the seizure-frequency reduction needed to improve HRQOL among medically treated individuals. METHODS: With data from 134 adults with refractory complex partial seizures participating in a randomized controlled antiepileptic drug (AED) trial, we compared the change in HRQOL across groups having different levels of change in seizure frequency: 100%, 75-99%, 50-74% reduction, and 0-50% increase or decrease. Changes over time within each seizure-reduction group also were assessed. HRQOL was measured by the QOLIE-31, QOLIE-89, and SF-36. RESULTS: Subjects who became seizure free reported significantly more positive change than those who did not on the QOLIE-31 and QOLIE-89 overall scores, the QOLIE-89 mental health, physical health, and epilepsy-targeted composites, as well as the SF-36 mental health summary score. Changes over time in overall QOLIE-31 and QOLIE-89 scores were significantly more positive for subjects who achieved seizure freedom (i.e., 100% reduction in seizure frequency) than for those who did not. No significant change in QOLIE-31 and QOLIE-89 overall scores was observed for subjects who did not achieve seizure freedom. CONCLUSIONS: In this study, HRQOL improvement occurred primarily among patients who achieved complete seizure freedom. Many AED trials use a 50% seizure-frequency reduction criterion as a trial end point, but measurable impacts of this degree of reduction in seizure frequency on HRQOL in this sample were not observed. These results further support striving for seizure freedom as an epilepsy care goal.     

Health-related quality of life of people with epilepsy compared with a general reference population: a Tunisian study

PURPOSE: The goal of the study was to assess the health-related quality of life (HRQOL) of persons with epilepsy (PWE) by using the short form survey 36 (SF-36), to compare it with that of a control group and to detect factors influencing it. METHODS: We collected clinical and demographic data and information on health status by using the Arabic translation of the SF-36 questionnaire from two groups: (a) 120 PWE consulting our outpatient clinic during a period of 4 months, and (b) 110 Tunisian citizens, representative of the Tunisian general population, as a control group. RESULTS: The mean age of PWE group was 32.74 years, and 45.5% were men. Idiopathic generalized epilepsies were observed in 44.5% of cases, and symptomatic partial epilepsies, in 30%. The most commonly prescribed drug was sodium valproate (VPA). For the SF-36, PWE had lower scores than the control group for only three subscales: general health perception, mental health, and social functioning. Seizure frequency, time since last seizure, and the antiepileptic drug (AED) side effects were the most important variables influencing the HRQOL among PWE. Seizure-free adults have HRQOL levels comparable to those of the control group. Sociodemographic variables had no influence on the SF-36 subscales. CONCLUSIONS: HRQOL is impaired in Tunisian PWE. The influencing factors identified in this study differ from the previously published data. Several possible reasons such as family support and cultural and religious beliefs are proposed to explain these cross-cultural differences. A larger study should be conducted to verify such findings.     

Health concerns predicts poor quality of life in well-controlled epilepsy

PurposeMost studies of quality of life (QOL) in seizure-free epilepsy patients suggest normal or near-normal function. Previous studies on QOL in well-controlled epilepsy have not investigated determinants for QOL from a database that includes a wide range of health related and epilepsy related variables, as well as demographical data, neuropsychological data, data from a comprehensive personality inventory and results from a QOL-questionnaire. Thus, the aim of this study was to analyze predictors of QOL based on such a range of variables.MethodsAdults with epilepsy on antiepileptic (AED) monotherapy and without epileptic seizures for at least 2 years (n = 158) were assessed with the QOLIE-89.ResultsThe main findings were that QOL in well-controlled epilepsy patients was in the normal range and that presence of substantial health related concerns was a significant predictor of poor QOL.DiscussionThe findings that substantial health concerns predict poor QOL may have clinical implications, as seizure-free epilepsy is a relatively benign condition, and careful information and counselling about this may alleviate health concerns and improve quality of life.     

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.     

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.     

Quality of life in young Italian patients with epilepsy

Abstract The objective was to evaluate the quality of life of young Italian patients with epilepsy and to investigate the influence of epilepsy medical variables on patients quality of life. The settings were the Department of Paediatrics, University of Padua; Childrens Hospital Giovanni XXIII, Bari; and three schools of South Italy. A sample of 285 subjects was selected: 140 subjects affected by idiopathic and cryptogenic epilepsy (classified according to the International League Against Epilepsy criteria) and 145 control subjects. Data derived from the comparison between the two groups throughout Epilepsy and children questionnaire confirmed the negative epilepsy impact on the young patients quality of life: in fact they scored significantly lower on psychological and social domains (p0.05) than the control group. The quality of life in children with epilepsy is significantly compromised. The questionnaire used in this study is a valid and reliable self-evaluation instrument that can improve clinical research on the quality of life in epilepsy.     

Psychosocial effects and evaluation of the health-related quality of life in patients suffering from well-controlled epilepsy

Abstract.Purpose: To record the impact of epilepsy on the psychological health and HRQOL of patients suffering from mild epilepsy in a rural area of southeastern Greece.Patients and methods: We studied fifty outpatients suffering from well-controlled uncomplicated epilepsy who experienced from none up to four seizures per year and had the ability to sustain a regular job. We tried to record the psychosocial effects resulting from epilepsy and to evaluate their HRQOL, comparing them to 50 healthy controls with similar demographic characteristics. To patients and controls were given the Short-Form Health Survey (SF-36) and a questionnaire based on the Hamilton and Mandrs depression scales.Results: According to the two depression and anxiety scales used, a mild degree of anxiety and depression was diagnosed but with unimportant statistical difference (p = ns) between patients and healthy controls. Self-perceived HRQOL of patients appeared to be affected,with vitality (p < 0.002), physical (p<0.001) and social functioning (p < 0.003) as the most impaired subscales of the SF-36. The deterioration in their HRQOL was mainly related to the post-diagnosis alteration of their socioeconomic status. As assessed by the multiple regression analyses, none of the disease history and medication-related variables were found to have any influence on the results of the SF-36 subtests.Conclusion: Despite the fact that we studied a relatively small sample of patients with mild epilepsy, our results showed that their HRQOL was obviously affected, while their psychological health remained nearly unaffected.     

Health-related quality of life for children with ASD: Associations with behavioral characteristics

This paper examines health-related quality of life (HRQoL) of children age 6–11 years with an autism spectrum disorder (ASD) using the Child Health and Illness Profile – Child Edition (CHIP–CE). We further examine associations of HRQoL scores with measures of behavior using regression models. Overall HRQoL scores are lower than those for normative samples. We find that both externalizing and internalizing behaviors (measured with the Child Behavior Checklist) are correlated with HRQoL as are several of the subscales of the aberrant behavior checklist. These results suggest that some potentially modifiable aspects of ASD, in particular ASD-related and aberrant behaviors, are associated with HRQoL. These associations are suggestive of the potential for improvements in behaviors in some domains having the potential to improve HRQoL. Future studies should determine whether improvements in behaviors are associated with improvements in HRQoL.     

The impact of depression and anxiety disorder symptoms on the health-related quality of life of children and adolescents with epilepsy

This study evaluated the effects of depression and anxiety disorder symptoms on the health-related quality of life (HRQOL) of children and adolescents with epilepsy. Sixty children and adolescents and their parents participated in the study. Symptoms of anxiety disorders were identified by the Screen for Child Anxiety Related Emotional Disorders questionnaire (SCARED) and symptoms of depression by the Mood and Feeling Questionnaire (MFQ). The Pediatric Quality of Life Inventory (PedsQL) was used for HRQOL assessments. A series of simple and partial correlations revealed that the levels of HRQOL significantly decrease as symptoms of depression or anxiety disorders increase and vice versa. Stepwise regression method of children's ratings resulted in a final model of school achievement and symptoms of generalized anxiety and separation anxiety disorder as predictors that explain 50.9% of the variation in HRQOL (F = 11.21, p < 0.000). For parents' ratings, the final model included symptoms of depression and separation anxiety disorder as predictors that explain 38.4% of the variation in HRQOL (F = 10.82, p < 0.000). In summary, symptoms of depression and generalized and separation anxiety disorders have the most significant impact on HRQOL.     

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.     

Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy

Purpose: To investigate the self‐reported quality of life (QOL) of children and adolescents with new‐onset epilepsy and explore parent’s perceptions of their child’s QOL and the impact of epilepsy on the family. Methods: As part of the Standard and New Antiepileptic Drug (SANAD) trial, 248 children (aged 8–15 years) with new‐onset epilepsy and their parents completed batteries of QOL measures. Children completed the KINDL and subscales of the QOLIE‐AD‐48. Parental questionnaires included the Rutter Parent Scales, Adverse Events Profile, and subscales of the Child Health Questionnaire. Key Findings: Compared with published norms, children with epilepsy had significantly poorer QOL across multiple domains compared with healthy children and children with asthma. Parents, particularly of younger children and those with other long‐term health problems, were affected by their child’s health or behavior, which affected their emotional well‐being and time for their own needs. Significance: Children with new‐onset epilepsy, particularly those with comorbid conditions, are at risk of reduced QOL at the time of diagnosis. It is important that children with epilepsy and their families are assessed for psychosocial problems so that early intervention can be undertaken.     

Postsurgical health-related quality of life (HRQOL) in children following hemispherectomy for intractable epilepsy

Health-related quality of life (HRQOL) is an important outcome measure in clinical research. Given the psychosocial and behavioral difficulties associated with pediatric epilepsy, evaluating HRQOL in this patient population is of particular importance. Though HRQOL has been examined in pediatric patients receiving focal resection or pharmacological (antiepileptic drug; AED) treatment, it has not been assessed in patients receiving hemispherectomy (HE) for intractable epilepsy. The current study evaluated HRQOL in a sample of pediatric HE cases (N=26) using previously validated questionnaires relative to surgical (N=30) and nonsurgical (N=84) comparison groups. Compared with focal resection and nonsurgical patients, parents of children who received HE reported similar levels of HRQOL. In surgical cases, worse HRQOL was correlated with residual seizure frequency. In both surgical and nonsurgical cases, female gender, higher AED load, and lower functional independence predicted worse HRQOL. Interestingly, HE status (i.e., having undergone HE) predicted fewer epilepsy-related limitations. Consistent with previous findings, AED load, in addition to lower functional abilities, appear particularly detrimental to life quality in pediatric epilepsy. HE, however, is not associated with increased risk for poor HRQOL. When considered in light of the multiple, significant risk factors for poor outcome associated with HE, children who undergo the procedure fare surprisingly well.     

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.     

难治性癫病人生活质量的调查

目的　了解难治性癫 (IE)病人的生活质量。方法　根据世界卫生组织 (WHO)生活质量内容和标准 ,用通用量表和相关问卷对 4 0 0例IE病人进行调查。结果　发现IE病人中有 92例 (2 3% )因病未完成 9年义务制教育 ;32 3例婚龄青年中有 12 5例 (38 7% )未婚 ,74例 (2 2 9% )病人结婚后离婚 ;317例次出现抗癫药副作用 ;132例出现忧郁表现、12 4例出现癫后精神障碍或谵妄、6 7例有交替性精神病、4 8例有癫样精神分裂症 ;2 4 2例病人在经济上依靠社会或家庭支持。结论　IE病人的生活质量受到疾病的明显影响。     

Health-related quality of life among adolescents with eating disorders

Objective

Health-related quality of life (HRQoL) is an emerging area of research in eating disorders (EDs) that has not been examined in adolescents in detail. The aim of the current study is to investigate HRQoL in an adolescent ED sample, examining the impact of ED symptoms on HRQoL.

Methods

Sixty-seven treatment-seeking adolescents (57 females) with anorexia nervosa (AN), bulimia nervosa (BN), or eating disorder not otherwise specified (EDNOS) completed self-report measures of HRQoL and ED symptoms.

Results

Participants reported poorer HRQoL in mental health domains than in physical health domains. Disordered attitudes, binge eating, and compensatory behaviors were associated with poorer mental health HRQoL, and body dissatisfaction was associated with poorer physical health HRQoL.

Conclusion

The current study assessed HRQoL among adolescents with EDs, finding several consistencies with the literature on adults with EDs. Future research should compare adolescents and adults with EDs on HRQoL.     

Topiramate on the quality of life in childhood epilepsy

This study evaluated the effect of topiramate (TPM) on the quality of life (QOL) in childhood epilepsy, using the Korean quality of life in childhood epilepsy (K-QOLCE) questionnaire. An open label, prospective, observational study of the families of 664 children with epilepsy from 41 centers was conducted. The parents completed the K-QOLCE at the baseline visit and again 6 months after starting TPM treatment. The parents reported the seizure frequency at both assessment dates. Statistically significant improvements in all K-QOLCE domains except social functioning were found at 6 months after starting TPM treatment from the baseline-scores (P < 0.05). However, improved QOL scores were not dependent on the reduction in seizure frequency. TPM significantly improved QOL in children with epilepsy, suggesting its potential clinical benefits.