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1.
BACKGROUND AND PURPOSE: Epilepsy is a frequent chronic disease in children, having a strong impact on a child's psychosocial functioning. Effective therapy must take into account the wide range of physical, psychological and social needs of patients. The importance of assessing patients' quality of life is becoming increasingly acknowledged. In addition to providing better health care, it may reveal how the disease and its psychosocial outcome interact. Quality of life in epilepsy can be assessed most reliably by disease-specific measures. Health-Related Quality of Life in Childhood Epilepsy (QOLCE) is an English parental questionnaire for children aged between 4 and 18 years. It contains 87 questions that fall into five domains: physical function, emotional well-being, cognitive function, social function and behavioural function. The original scale has a well-grounded theoretical background and good psychometric properties. The aim of the study was to create a Polish version of QOLCE and evaluate its psychometric properties. MATERIAL AND METHODS: Parents of 87 patients suffering from epilepsy were recruited in neurological clinics in the Warsaw area. RESULTS: Reliability was very high (Cronbach's alpha = 0.97). The construct validity was confirmed by the correlation between subscales of QOLCE and the Child Behaviour Checklist, as well as selected clinical measures of child's health (duration of disease: r=-0.22, p=0.02; duration of treatment: r=-0.20, p=0.04; number of hospitalizations: r=-0.24, p=0.02). All the psychometric properties were similar to those of the original scale. CONCLUSIONS: A Polish scale examining the quality of life was created that takes into account a wide range of psychosocial problems. We confirmed very high reliability and good validity, and thus we recommend the inventory for both research on and clinical diagnostics of Polish children with epilepsy.  相似文献   

2.
For youth with epilepsy, comorbid psychiatric conditions, such as depression and anxiety, require further examination as they carry increased risk for reduced health-related quality of life (HRQOL). The current study assessed whether rates of depression, anxiety, and withdrawal behaviors differed based on seizure location. Data included parental ratings on the Behavior Assessment System for Children (BASC-2) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 132 children and adolescents (mean age = 11.34, SD = 3.95) with generalized or partial (i.e., frontal [FLE] or temporal lobe epilepsy [TLE]) epilepsy. Our results identified clinically significant internalizing psychopathology in nearly half of our sample (41%). Although rates of internalizing behavior were similar between generalized and partial groups, children and adolescents with TLE demonstrated higher rates of depression compared to youth with FLE. No effects of laterality on internalizing behaviors were identified between TLE and FLE groups. Finally, for youth with TLE, parental depression ratings along with current number of antiepileptic medications (AEDs) were found to be significant barriers to HRQOL above and beyond anxiety, withdrawal, and epilepsy-specific variables. Temporal lobe epilepsy was associated with a two-fold risk of clinically significant depression ratings. These findings highlight the high prevalence of internalizing psychopathology features in pediatric epilepsy and offer further support for the relationship between depression and TLE in children and adolescents with epilepsy.  相似文献   

3.
The aim of the study was to compare sleep patterns in children with epilepsy with those of their non-epileptic siblings and to determine which epilepsy-specific factors predict greater sleep disturbance. We conducted a case-control study of 55 children with epilepsy (mean age 10y, range 4 to 16y; 27 males, 28 females) and their nearest-aged non-epileptic sibling (mean age 10y, range 4 to 18y; 26 males, 29 females). Epilepsy was idiopathic generalized in eight children (15%), symptomatic generalized in seven (13%), and focal in 40 (73%); the mean duration was 5 years 8 months. Parents or caregivers completed the Sleep Behavior Questionnaire (SBQ) and Child Behavior Checklist (CBCL) for patients and controls, and the Quality of Life in Childhood Epilepsy (QOLCE) for patients. Patients had a higher (more adverse) Total Sleep score (p<0.001) and scored worse than controls on nearly all subscales of the SBQ. In patients, higher Total Sleep scores were correlated with higher scores on the Withdrawn, Somatic complaints, Social problems, and Attention subscales of the CBCL, and significantly lower Total Quality of Life Scores. Refractory epilepsy, mental retardation, and remote symptomatic etiology predicted greater sleep problems in those with epilepsy. We conclude that children with epilepsy in this current study had significantly greater sleep problems than their non-epileptic siblings.  相似文献   

4.
The first objective of this study was to determine the quality of life of children with benign rolandic epilepsy. Secondly, this investigation aimed to predict the influence of cognition on quality of life, controlling for the emotional impact of the epilepsy on the parent. Initial recruitment was through the major electroencephalography laboratories of metropolitan Sydney. The syndrome was defined using the International League Against Epilepsy classification. Patients underwent a comprehensive cognitive assessment, and parents completed the Child Health Questionnaire, Child Behavior Checklist, and Quality of Life in Childhood Epilepsy Questionnaire. Parental emotional impact was assessed using a subscale from the Child Health Questionnaire. The cohort included 30 patients (22 males, 8 females), mean age 9.67 years. There was a higher incidence of competence problems compared with normative data. The average psychosocial score was significantly lower than normative data. Controlling for parental emotional impact, general intellectual ability predicted quality of life in the areas of self-esteem and language. Clinical variables had minimal impact and were not included in the regression models. Parental emotional impact, however, was a major independent predictor of quality of life. Quality of life may be compromised in children with benign rolandic epilepsy and is related to cognitive variables and emotional impact of the epilepsy on the parent.  相似文献   

5.
OBJECTIVE: To determine patient-oriented outcome after anterior temporal lobectomy (ATL) for refractory epilepsy. BACKGROUND: Health-related quality of life (HRQOL) is an important component of the assessment of outcome from epilepsy surgery, but prior controlled studies of the effect of surgery on HRQOL are inconclusive. Direct assessment of the effect of surgery on patient concerns of living with epilepsy has not been reported. METHODS: We used reliable and valid instruments to compare HRQOL and patient concerns of 125 patients who had received an ATL more than than one year previously to a clinically similar group of 71 patients who were awaiting ATL. All patients were selected for surgery based on similar criteria. We also used bivariate correlation analysis and multivariate regression modeling to determine the association of traditional outcome variables with HRQOL. RESULTS: Patients who had undergone ATL reported significantly less concern of living with epilepsy in 16 of 20 items of the EFA Concerns Index and better HRQOL in 8 of 11 scales of the Epilepsy Surgery Inventory-55. Regression analysis in the postoperative group demonstrated that mood status, employment, driving, and antiepileptic drug (AED) cessation, but not seizure-free status or IQ, were associated with better HRQOL. CONCLUSIONS: Our findings support a positive affect of ATL on patient concerns and HRQOL in refractory temporal lobe epilepsy, although longitudinal studies are needed to corroborate these results. Mood, employment, driving ability, and AED use are important postoperative predictors of HRQOL.  相似文献   

6.
This study investigated health-related quality of life (HRQOL) in young adults with epilepsy and intellectual disabilities. First, agreement between self-reports and proxy reports of HRQOL was examined. Second, medical and psychological contributions to HRQOL were explored. Thirty-six patients were interviewed using the Quality of Life in Epilepsy inventory (QOLIE-31), the Hospital Anxiety and Depression Scale, and the Neuroticism and Extraversion scales of the NEO Five-Factor Inventory. Medical data were taken from files. Professional caregivers completed rephrased QOLIE-31-questionnaires. The perspectives on HRQOL differed systematically: Caregivers underrated their clients' HRQOL on average. Few correlations with medical characteristics emerged, whereas all psychological variables were strongly related to HRQOL. Neuroticism, Age at Disability Onset, and their interaction explained 71% of the HRQOL variance. Results indicate that proxy reports do not provide valid substitutes for most of the self-reported HRQOL subscales. Psychological treatment of negative affectivity and after critical life events in adolescence may improve HRQOL in young adults with epilepsy and mild intellectual disabilities.  相似文献   

7.
Children and adolescents with epilepsy often show higher rates of executive functioning deficits and are at an increased risk of diminished health-related quality of life (HRQOL). The purpose of the current study was to determine the extent to which executive dysfunction predicts HRQOL in youth with epilepsy. Data included parental ratings on the Behavior Rating Inventory of Executive Function (BRIEF) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 130 children and adolescents with epilepsy (mean age = 11 years, 6 months; SD = 3 years, 6 months). Our results identified executive dysfunction in nearly half of the sample (49%). Moderate-to-large correlations were identified between the BRIEF and the QOLCE subscales of well-being, cognition, and behavior. The working memory subscale on the BRIEF emerged as the sole significant predictor of HRQOL. These results underscore the significant role of executive function in pediatric epilepsy. Proactive screening for executive dysfunction to identify those at risk of poor HRQOL is merited, and these results bring to question the potential role of behavioral interventions to improve HRQOL in pediatric epilepsy by specifically treating and/or accommodating for executive deficits.  相似文献   

8.
In order to examine the importance of a range of potential risk factors for behaviour problems in children with severe intellectual disability, a sample was identified by the administration of a screening version of the Vineland Adaptive Behaviour Scales (VABS) to the parents of children aged 4–11years attending six special needs schools in three adjacent inner London boroughs. Parents whose children had a VABS standard score of 50 were interviewed using the Disability Assessment Schedule and both parents and teachers completed the Aberrant Behaviour Checklist. Most behaviour problems were more common in ambulant children, but problems less dependent on the ability to walk, such as sleeping difficulties, screaming and self-injury, were equally common in ambulant and non-ambulant children. Among ambulant children, there were few significant associations between the severity of the child's behaviour problems and the age or sex of the child, the presence or absence of epilepsy, and various indices of socio-economic disadvantage. Sleeping difficulties, overactivity, self-injury, destructive behaviour and autistic features, such as social withdrawal and stereotypies, were strongly associated with skills deficits, but aggression, temper tantrums and general disruptive behaviour were not. Limitations in daily living skills were better predictors of behaviour problems than were poor communication skills.  相似文献   

9.
Our knowledge of the epidemiology of psychopathology in children and adolescents with intellectual disability (ID) is hampered by a number of factors. These include the relative scarcity of studies of children rather than adults, the study of non-epidemiological samples such as those in institutions or those attending psychiatric clinics, a lack of standardized methods of assessment of psychopathology, studies with numbers too small to provide adequate confidence intervals around identified prevalence rates, insufficient detail concerning symptoms or syndromes as well as disorder, and a lack of consistent data concerning the effects of basic demographic variables such as age, sex and IQ. Despite these limitations, it is clear that psychopathology is several times more prevalent in children and adolescents with ID than in those without this disability. This paper reviews findings from previous studies and describes the methodology of a new study using the Developmental Behaviour Checklist.  相似文献   

10.
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.  相似文献   

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