Mark Sabaz

Validation of a New Quality of Life Measure for Children with Epilepsy

Summary: Purpose: There is no adequate measure of health‐related quality of life (HRQOL) specifically for children with epilepsy. The aim of this study was to develop an epilepsy‐specific HRQOL questionnaire for children, covering five domains: physical function, emotional well‐being, cognitive function, social function, and behavior. Second, we aimed to demonstrate the instruments reliability and validity, and its sensitivity to differences in epilepsy severity.

Memory function in childhood epilepsy syndromes

Objective:  Children with epilepsy are at risk of specific cognitive deficits. We aimed to compare and characterize the memory function of children with childhood absence epilepsy (CAE), frontal lobe epilepsy (FLE) and temporal lobe epilepsy (TLE).

The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability.

Summary:  Purpose: To determine whether refractory epilepsy affects the health‐related quality of life (HRQOL) of children with or without intellectual disability (ID), and if the presence of ID independently compromises HRQOL in children with refractory epilepsy.

The Neuropsychological and Language Profile of Children with Benign Rolandic Epilepsy

Summary:  Purpose: Benign rolandic epilepsy (BRE) has an excellent prognosis for seizures, but recent research has raised concerns using cognition as an outcome measure. Methodologic problems related to recruitment bias and assessment processes are evident in previous studies. With well‐defined criteria for inclusion and comprehensive assessment, the aim of this study was to define the cognitive profile of children with BRE and to assess the effect of interictal EEG activity.

Intelligence in childhood epilepsy syndromes

UNLABELLED Intellectual deficits play a significant role in the psychosocial comorbidity of children with epilepsy. Early educational intervention is critical. OBJECTIVE This study aims to determine the intellectual ability of children with common childhood epilepsy syndromes-generalised idiopathic epilepsy (GIE), generalised symptomatic epilepsy (GSE), temporal lobe epilepsy (TLE), frontal lobe epilepsy (FLE), central epilepsy (CE) and non-localised partial epilepsy (PE). METHODS A prospective consecutive series of 169 children were recruited. Epilepsy syndrome was identified by clinical data, seizure semiology, interictal and ictal EEG in each child, using International League Against Epilepsy criteria. Each child had neuropsychology assessment using age-normed and validated instruments. After adjusting for important epilepsy variables, 95% confidence intervals were generated for mean full-scale intelligence quotient (FSIQ) using ANCOVA. RESULTS Significant differences between epilepsy syndrome groups were found for age of onset (P<0.001), duration of active epilepsy (P=0.027), seizure frequency (P=0.037) and polytherapy (P=0.024). Analysing FSIQ, children with GIE, CE and TLE performed best, and did not differ statistically. Children with GSE had a statistically lower FSIQ than other syndrome groups except PE. FLE functioned significantly better than GSE, but did not differ statistically from other groups. CONCLUSIONS In childhood epilepsy, delineation of the syndrome has important implications when considering intellectual potential. This information is invaluable in planning educational interventions and supporting the family.

Validation of the Quality of Life in Childhood Epilepsy Questionnaire in American epilepsy patients

The aim of this study was to adapt the Australian Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) and determine its psychometric properties in a North American population. Participants were North American families with children diagnosed with epilepsy. Parents were asked to complete the American QOLCE (USQOLCE) and the Child Health Questionnaire (CHQ). Seventy-one families completed the USQOLCE. The internal consistency reliability of the subscales was good. USQOLCE subscales correlated highly with theoretically similar subscales contained in the CHQ. Theoretically dissimilar subscales on the two instruments did not correlate as well. USQOLCE correlated significantly with a parental rating of seizure severity and an independent measure of degree of postoperative seizure control. This study demonstrated that the USQOLCE is suitable for a North American population with evidence of its reliability and validity including its sensitivity to seizure burden.

The impact of epilepsy surgery on quality of life in children

Objective: To determine if epilepsy surgery is effective in improving the quality of life (QOL) of children with intractable seizures using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). Methods: The authors conducted a prospective study of the families of 35 children with intractable epilepsy who underwent epilepsy surgery. Parents completed the QOLCE preoperatively and again 6 to 18 months after surgery. At both assessment dates parents indicated the severity of their child’s seizures during the past 6 months and the frequency of their child’s seizures during the past 4 weeks on Likert-type scales. Children were split into two groups according to surgery outcome: seizure free vs persistent seizures. Statistical analyses were conducted to determine if children rendered seizure free showed a greater improvement in QOL compared to those with persistent seizures postoperatively. Results: Greater improvement in QOL was documented for children rendered seizure free vs children with persistent seizures. This was significant for the overall QOLCE QOL score and subscales assessing cognitive, social, emotional, behavioral, and physical domains of life. Conclusions: Epilepsy surgery improves the quality of life of children rendered seizure free. Families can be counseled preoperatively of the potential benefits of surgery beyond seizure reduction.

The health‐related quality of life of childhood epilepsy syndromes

Objective:  There is increasing awareness of the importance of assessing physical, psychological, social and behavioural well‐being in chronic disease. The aim of this study was to examine the health‐related quality of life (HRQoL) of children with common epilepsy syndromes and to explore if there are HRQoL differences between those syndromes.

Prevalence, comorbidities, and correlates of challenging behavior among community-dwelling adults with severe traumatic brain injury: a multicenter study

Objective:Investigate the prevalence, comorbidities, and correlates of challenging behaviors among clients of the New South Wales Brain Injury Rehabilitation Program. Setting:All community-based rehabilitation services of the statewide program. Participants:Five hundred seven active clients with severe traumatic brain injury. Design:Prospective multicenter study. Main Measures:Eighty-eight clinicians from the 11 services rated clients on the Overt Behaviour Scale, Disability Rating Scale, Sydney Psychosocial Reintegration Scale–2, Care and Needs Scale, and Health of the Nation Outcome Scale–Acquired Brain Injury. Results:Overall prevalence rate of challenging behaviors was 54%. Inappropriate social behavior (33.3%), aggression (31.9%), and adynamia (23.1%) were the 3 most common individual behaviors, with 35.5% of the sample displaying more than 1 challenging behavior. Significant associations were found between increasing levels of challenging behavior and longer duration of posttraumatic amnesia, increasing functional disability, greater restrictions in participation, increased support needs, and greater degrees of psychiatric disturbance, respectively (P < 0.004). Multivariate binomial logistic regression found that premorbid alcohol abuse, postinjury restrictions in participation, and higher levels of postinjury psychiatric disturbance were independent predictors of challenging behavior. Conclusions:Challenging behaviors are widespread among community-dwelling adults with severe traumatic brain injury. Services need to deliver integrated anger management, social skills, and motivational treatments.

Prevalence, clinical features, and correlates of inappropriate sexual behavior after traumatic brain injury: a multicenter study.

Objective:Investigate the prevalence and clinical features of inappropriate sexual behavior (ISB) among a community-based cohort of clients of the New South Wales Brain Injury Rehabilitation program. Setting:All 11 community-based rehabilitation services of the statewide network. Participants:Five hundred seven clients with severe traumatic brain injury. Design:Cross-sectional multicentre study. Main Measures:Overt Behavior Scale, Disability Rating Scale, Sydney Psychosocial Reintegration Scale-2, Health of the Nation Outcome Scale–Acquired Brain Injury, Care and Needs Scale. Results:The point prevalence rate of ISBs was 8.9% (45/507) over the previous 3 months. Inappropriate sexual talk comprised 57.9% of all ISBs, followed by genital and nongenital touching behaviors (29.8%) and exhibitionism/public masturbation (10.5%). In 43 of 45 cases, ISBs were accompanied by other challenging behaviors, most often inappropriate social behavior, and/or aggression. Individuals who sustained more severe injuries and who were younger were significantly more likely to display ISBs. People displaying ISBs were more likely to display higher levels of challenging behaviors overall, lower levels of social participation, and more neuropsychiatric sequelae than 2 other groups: people displaying no challenging behaviors and people displaying challenging behaviors but no ISBs respectively. Conclusions:ISBs pose a complex clinical challenge among a minority of individuals with severe TBI.