Executive dysfunction is a significant predictor of poor quality of life in children with epilepsy

PURPOSE: Based on prior research indicating poor health-related quality of life (HRQOL) in children with attention-deficit/hyperactivity disorder, we investigated (1) whether executive functioning deficits were related to poor HRQOL in children with epilepsy, (2) how important these variables were in comparison to known predictors of HRQOL such as neurological factors, and (3) the extent to which clinical-level impairments in executive dysfunction predispose children to low HRQOL. METHOD: Data included scores on the Behavior Rating Inventory of Executive Function (BRIEF) and HRQOL scales (The Impact of Childhood Illness Scale [ICI] and Hague Restrictions in Epilepsy Scale [HARCES]) for 121 children (mean age = 11.9, SD = 3.6) from a tertiary center serving children with severe epilepsy. RESULTS: Correlations between the BRIEF and ICI total and subscore domains (child, parent, family, and treatment) were generally significant and moderate (e.g., r > or = 0.30, p < or = 0.001). BRIEF Global Executive Composite, number of antiepileptic drugs (AEDs), number of prior AEDs, and adaptive level all emerged as significant and unique predictors of HRQOL (R(2)= 0.36, adj. R(2)= 0.33, p < 0.0001). A clinically elevated BRIEF was associated with a twofold risk of low HRQOL (odds ratio = 2.21, p = 0.03). CONCLUSIONS: Executive dysfunction appears to exert a broad adverse influence on HRQOL in children with epilepsy, with clinical-level impairments in executive dysfunction contributing to a twofold increase in the likelihood of poor HRQOL. The constellation of executive dysfunction, low adaptive level, high medication load, and a history of several failed AEDs are risk factors for poor HRQOL in children with epilepsy.     

Predictors of health-related and global quality of life among young adults with difficult-to-treat epilepsy and mild intellectual disability

ObjectiveThis study evaluated predictors of health-related quality of life (HRQOL) and global quality of life (QOL) among young adults with difficult-to-treat epilepsy and mild intellectual disability.MethodsOne hundred and forty-two persons with epilepsy and cognitive problems were routinely screened on HRQOL, global QOL, and psychological distress four weeks after admission to a time-limited residential rehabilitation unit. The PESOS scales (PE = PErformance, SO = SOciodemographic aspects, S = Subjective evaluation/estimation) on epilepsy-specific problems were administered as measures of HRQOL; a questionnaire on life satisfaction and an item on overall QOL were used as measures of global QOL. Psychological distress was captured with the Symptom Checklist 90-R. Further data were gained from medical files. Quality-of- life predictors were identified using univariate methods and stepwise regression analyses.ResultsPsychological distress was the only predictor of all HRQOL and global QOL parameters. Seizure frequency was a predictor of most HRQOL variables. Other epilepsy variables affected only some HRQOL variables but were not associated with global QOL. Health-related quality of life did not seem to be strongly impaired. Only low correlations were found between HRQOL and global QOL.ConclusionThe notion of psychological distress as the most influential predictor of all QOL measures is in line with most findings on QOL in epilepsy. Former observations of weak associations between HRQOL and global QOL among patients with epilepsy and mild intellectual disability are supported. Thus, interventions to reduce psychological distress, besides epilepsy treatment, seem to be of great importance to improve QOL.     

Even a single seizure negatively impacts pediatric health-related quality of life

Purpose:  Both a single seizure and chronic recurrent seizures (epilepsy) occur commonly in childhood. Although several studies have documented the impact of pediatric epilepsy on psychosocial functioning, such as health-related quality of life (HRQOL), no studies have examined the impact of a single seizure on HRQOL. The primary objectives of this study were: (1) to compare parent–proxy HRQOL in children with a single seizure and newly diagnosed untreated epilepsy to normative data and (2) to examine differences in parent–proxy HRQOL between children with single seizure and newly diagnosed untreated epilepsy.
Methods:  A retrospective medical chart review was conducted on a consecutive cohort of children being evaluated for seizures at a New-Onset Seizure Disorder Clinic. Information from the medical chart review included demographic data, seizure information, and the parent–proxy Pediatric Quality of Life Inventory (PedsQL), a well-validated measure of HRQOL in pediatric chronic illnesses.
Results:  Participants included 109 children (n = 53 single seizure; n = 56 newly diagnosed untreated epilepsy). Results indicated that both children with a single seizure and children with newly diagnosed untreated epilepsy had significant impairments in HRQOL compared to normative data. However, no significant HRQOL differences were found between the single seizure and the untreated epilepsy groups.
Discussion:  Children diagnosed with a single seizure or epilepsy have similar clinically significant impairments in HRQOL. Evaluation of HRQOL, even after a first seizure, is important and will identify children at risk at the earliest opportunity, allowing for timely psychosocial intervention.     

Development of the Quality of Life in Epilepsy Inventory for Adolescents: The QOLIE-AD-48

PURPOSE: We report the development of an instrument to assess health-related quality of life (HRQOL) in adolescents with epilepsy. METHODS: A sample of 197 English-speaking adolescents (aged 11-17 years) with epilepsy completed a test questionnaire of 88 items. Also included were mastery and self-esteem scales to assess external validity. A parent simultaneously completed an 11-item questionnaire to evaluate the child's HRQOL. Both adolescent and parent questionnaires were repeated in 2-4 weeks. Demographic information and information pertaining to seizures were collected at baseline along with assessment of systemic and neurologic toxicity. RESULTS: The QOLIE-AD-48 contains 48 items in eight subscales: epilepsy impact (12 items), memory/concentration (10), attitudes toward epilepsy (four), physical functioning (five), stigma (six), social support (four), school behavior (four), health perceptions (three), and a total summary score, with higher scores indicating better HRQOL. Internal construct validity was demonstrated in a single-factor solution for the eight dimensions. All correlations were statistically significant at p < 0.05 level. Internal consistency reliability estimated by Cronbach's alpha coefficient was 0.74 for the summary score and ranged from a low of 0.52 (three-item Health Perceptions Scale) to 0.73-0.94 for the other individual scales. Good test-retest reliability was found for the overall measure (0.83). Summary score correlations with the two external validity scales, self-efficacy and self-esteem were 0.65 and 0.54, respectively. Statistically significant differences in summary scores indicating that HRQOL was increasingly better for adolescents as seizure severity decreases (no seizures = 77+/-13, low = 70+/-17, high = 63+/-17) were found among seizure-severity groups. CONCLUSIONS: These data describe the development of a robust instrument to evaluate HRQOL in adolescents with epilepsy. Empiric analyses provide strong evidence that the QOLIE-AD-48 is both a reliable and valid measure for adolescents with epilepsy.     

Impact of obsessive-compulsive disorder on quality of life

BACKGROUND: Although obsessive-compulsive disorder (OCD) has been found to be the 10th leading cause of disability of all medical conditions in the industrialized world, comparatively little is known about psychosocial functioning and quality of life (QOL) in OCD, particularly with regard to their relationship with symptom severity. METHOD: Quality of life and psychosocial function of 197 adults were assessed as part of a larger intake interview for a 5-year prospective study of OCD course. Two self-report measures (the Quality of Life Enjoyment and the Medical Outcomes Survey 36-Item Short-Form Health Survey) and 2 clinician-rated measures (the Range of Impaired Functioning Tool and the Social and Occupational Functioning Assessment Scale), each with established reliability and validity, were administered. Symptom severity was assessed with the Yale-Brown Obsessive-Compulsive Scale (YBOCS). RESULTS: Quality of life was significantly impaired compared with published community norms with large effect sizes found for all domains assessed. The correlations (r) between all QOL measures and the YBOCS total score were significant, ranging from 0.40 to 0.77. Correlations between the YBOCS obsessions subscore and QOL measures were higher than those found between the YBOCS compulsions subscore and QOL. Insight as measured by the Brown Assessment of Beliefs Scale was significantly correlated with 5 of the 7 measures, although more modestly than the YBOCS correlations (r = 0.22 to 0.37). Subjects with a YBOCS score of 20 or higher had significant decline in QOL compared with those subjects with YBOCS scores lower than 20. Severity of obsessions and depressive symptoms, as well as marital status, were significant predictors of impairment in QOL. CONCLUSIONS: These findings indicate that all aspects of QOL are markedly affected in individuals with OCD and are associated with OCD severity (particularly obsessional severity) and depression severity. Exploratory results suggest that QOL and psychosocial functioning begins to be more significantly affected at YBOCS scores higher than 20. This score might be considered as a threshold criterion for OCD for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.     

Quality of life after spinal cord injury

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

Assessment of Quality of Life in People with Epilepsy: Some Practical Implications

Summary: Growing recognition of the need to assess the impact of epilepsy on psychosocial functioning has led to a number of initiatives to quantify quality of life (QOL) in patients with this condition. To understand the impact of epilepsy and its treatment, physical, social, neuropsychological, and psychological functioning aspects must be considered. It also is apparent from previous research work that measures of QOL should be comprehensive enough to address the question under consideration, but also simple and as brief as possible. A number of QOL measures for assessing the impact of epilepsy and its treatment exist, such as the Washington Psychosocial Seizure Inventory, the Social Effects Scale, the Epilepsy Surgery Inventory, the Quality of Life in Epilepsy (QOLIE) questionnaire, and the Liverpool QOL Battery. These measures have in most cases been shown to be reliable, valid, and sensitive to change, although at the current stage of development, some are better validated than others. It is generally agreed that the best approach is to use a standard generic instrument with disease-specific additions. Selection of a measure already in existence is recommended, as the process of producing a new measure is costly in terms of both resources and time. Some consideration also needs to be given to factors such as the process of administration (e.g., self-completion or administration at interview) or the timing of data collection. Then questions such as the cross-cultural applicability of QOL measures and the real relevance of the changes remain to be answered. It is hoped that, over the next few years, significant progress will be made in addressing these issues.     

Quality of Life in Adult Patients with Epilepsy

Summary: Quality of life (QOL) must be determined from the patients' subjective viewpoint. To determine QOL in epilepsy, it is necessary to use disease-specific scales. We introduced the Side Effects and Life Satisfaction (SEALS) scale to Japan and performed a comparative study on adult patients with epilepsy and normal subjects. The results for patients with epilepsy were determined by the number of prescribed antiepileptic drugs (AEDs), the total dosage, and the type of epilepsy. Problems in patients with epilepsy were expressed by vertically crossing lines. A horizontal line expressed the severity of disease, and a vertical line expressed the psychosocial functioning. Therefore we cannot separate the severity and QOL when considering the influence of epilepsy disorders on individual patients. These two components compose the biphasic dimensions of QOL and thus are analyzed coincidentally. The concepts of QOL and comprehensive management in epilepsy are closely related, but the fundamental viewpoints are located at opposite positions. The former is based on the physicians' viewpoints and the latter on the patients' viewpoints. Although ideally these two concepts should be in harmony, they are in reality frequently dissociated. In comprehensive management, the treating physician must vigorously consider the influence of therapy on the patients' QOL.     

Impact of pediatric epilepsy on the family: a new scale for clinical and research use

PURPOSE: There is no brief, global instrument available that specifically measures the psychosocial impact of pediatric epilepsy on the family. An 11-item scale was created for parents' use to evaluate the influence of epilepsy on the major aspects of their family and child's life. This will be a helpful tool both in the clinical setting and as an outcome measure for research studies. METHODS: Mothers rated their child's quality of life on a visual analogue scale (1-6) and completed the Impact of Pediatric Epilepsy Scale (IPES), which assesses the impact on academic achievement, participation in activities, health, relationships with family and with peers and siblings, social activities, self-esteem, and the caregiver's hopes for their child's future adapted from the scale developed by Jacoby. External validation was determined by comparison of the IPES with physicians' reports of the characteristics of the child's epilepsy and neurological limitations and parents' ratings on the Family Environment Scale or Parenting Stress Index. In addition, each school-aged child completed the Piers-Harris Children's Self-Concept Scale, Brother-Sister Questionnaire, and Loneliness Scale. Teachers of children completed the Academic Performance Rating Scale. Seven days later, retest reliability of the IPES was evaluated. RESULTS: Ninety-seven mothers of children aged 2-16 years completed the IPES and the appropriate family and age-related questionnaires. Internal validation on the IPES yielded a Cronbach's a for the scale of 0.92. A significant Pearson's correlation indicated that total scores were consistent over time (r = 0.81). Spearman's correlations for the individual items were also significant, ranging from 0.48 to 0.78. Significant Spearman's correlations also indicated that quality of life was negatively related to impact on each of the 11 items of psychosocial function. Children with IPES scores above the median differed in some psychosocial aspects from those who scored below. Their parents were more stressed, their siblings were more respectful, they had lower self-esteem, and they experienced more emotional problems. Total impact was also significantly related to seizure frequency, total number of medications taken, number of visits to a physician in the previous year, and number of nights spent in hospital for neurological reasons. CONCLUSIONS: The IPES is an accurate, acceptable, and quick measurement tool that reflects the way in which childhood epilepsy has an impact on the child and on family life. It may be helpful in routine clinical care and may be useful in the research setting to find ways to improve the lives of children with 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.