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Biomedical subjects

Gus A Baker

Publications and source records attributed to Gus A Baker.

At least 19 recordsLinked to original sources

The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale.

Few suitable instruments exist for use with people, especially children, with both epilepsy and learning disabilities. One such measure is the Epilepsy and Learning Disabilities Quality of Life scale (ELDQOL), which has recently undergone revision following feedback from relevant users. This article reports on the final psychometric testing phase of this scale. ELDQOL consists of 70 items covering seizure severity, seizure-related injuries, antiepileptic drug side effects, behavior, mood, physical, cognitive, and social functioning, parental concern, communication, overall quality of life, and overall health. Revalidation involved a qualitative phase, to ascertain users' opinions on the wording, coverage, and layout of the questionnaire, and a quantitative phase, to examine internal consistency, test-retest reliability, and validity. There is very good evidence of the reliability and validity of the final version of ELDQOL, making it a promising instrument for assessing quality of life in children/young adults with epilepsy and learning disabilities.

Adolescent↗

Recognition of emotion with temporal lobe epilepsy and asymmetrical amygdala damage.

PURPOSE: Impairments in emotion recognition occur when there is bilateral damage to the amygdala. In this study, ability to recognize auditory and visual expressions of emotion was investigated in people with asymmetrical amygdala damage (AAD) and temporal lobe epilepsy (TLE). METHODS: Recognition of five emotions was tested across three participant groups: those with right AAD and TLE, those with left AAD and TLE, and a comparison group. Four tasks were administered: recognition of emotion from facial expressions, sentences describing emotion-laden situations, nonverbal sounds, and prosody. RESULTS: Accuracy scores for each task and emotion were analysed, and no consistent overall effect of AAD on emotion recognition was found. However, some individual participants with AAD were significantly impaired at recognizing emotions, in both auditory and visual domains. CONCLUSIONS: The findings indicate that a minority of individuals with AAD have impairments in emotion recognition, but no evidence of specific impairments (e.g., visual or auditory) was found.

Adult↗

Depression and suicide in adolescents with epilepsy.

Depression and other disorders are underdiagnosed and undertreated in young people with epilepsy. Signs of depression are often dismissed as "normal" reactions, even though depression is a life-threatening disease and a risk factor for suicide. A strong correlation between epilepsy and depression has been demonstrated in a variety of studies; etiological factors include neurologic, genetic, and iatrogenic factors. At the time of the initial diagnostic evaluation, the physician who is managing the patient with seizure disorder should make a psychiatric and psychosocial assessment to identify the patient's risk for depression. This approach enables the physician to assess the impact of epilepsy on the patient and to detect gross signs of psychiatric disorder. Effective treatment options include both somatic and nonsomatic therapies as well as combinations thereof.

Adolescent↗

A randomized, double-blind, placebo-controlled trial of topiramate in adults with epilepsy and intellectual disability: impact on seizures, severity, and quality of life.

This randomized, double-blind, placebo-controlled UK trial evaluated the effect of topiramate as add-on therapy on seizure frequency, seizure severity, and quality of life in patients with epilepsy and intellectual disability. There were three phases: 4 weeks baseline, 18 weeks titration to 200-400 mg topiramate/day (adults) or 5-9 mg/kg/day (children), 12 weeks maintenance. Recruitment was low (88/120); analyses were underpowered. Seizure frequency varied enormously (median 17.7, maximum 1706.2). There was no significant difference in reduction in mean total seizure frequency or number of responders between the groups. Topiramate reduced seizure frequency by >30% from baseline (placebo 1%); post hoc analyses showed a trend toward significance (R ratio, P=0.052). There were no significant differences between the groups with respect to mean seizure severity or other outcome measures. Topiramate was generally well tolerated; body weight (P=0.015) and systolic blood pressure (P=0.043) were reduced. The study suggests that topiramate reduces seizure frequency in patients with epilepsy and intellectual disability without the added burden of behavior effects, and was potentially advantageous to physical well-being.

Adaptation, Psychological↗

Does alexithymia differentiate between patients with nonepileptic seizures, patients with epilepsy, and nonpatient controls?

Considering the evidence of an association between alexithymia and somatization, this study aimed to discover whether alexithymia could distinguish patients with psychogenic nonepileptic seizures (NES) from those with epilepsy (ES) and nonpatient controls (C). Toronto Alexithymia Scale (TAS-20) scores were obtained from 21 matched participants from each of these groups, together with measures of anxiety and depression. Overall TAS-20 scores did not differentiate the three groups after controlling for anxiety and depression, but scores on certain subscales of the TAS-20 differed significantly between the patient groups and the controls. Although alexithymia could not discriminate individuals with NES from those with organic manifestations, whether the etiology of alexithymia may differ according to patient group was discussed. Given that 90.5% of NES patients were identified as alexithymic, treatment approaches used for individuals with alexithymia may be usefully applied to those with NES.

Adolescent↗

Impact of epilepsy in adolescence: a UK controlled study.

PURPOSE: The goals of the work described here were to investigate the psychological and social impact of epilepsy on adolescents and to identify to what degree clinical and demographic variables and knowledge of epilepsy could influence psychosocial functioning. METHODS: Seventy adolescents with epilepsy were compared with healthy controls (matched for age, sex, and reading ability) on measures of self-esteem, social adjustment, depression, and obsession. Within the epilepsy group, the impact of seizure frequency, seizure severity, and knowledge of epilepsy on the above measures was also determined. RESULTS: Adolescents with epilepsy showed significantly higher levels of depression, anhedonia, and social anxiety and significantly higher numbers of obsessive symptoms than the adolescents without epilepsy. Among the adolescents with epilepsy, high seizure frequency was significantly associated with low self-esteem, and tonic-clonic seizures were specifically associated with higher levels of depression. Finally, low levels of epilepsy knowledge were significantly associated with higher levels of depression, lower levels of self-esteem, and higher levels of social anxiety. CONCLUSIONS: Epilepsy has a significant psychosocial impact on adolescents at this difficult time of life. Social support and access to appropriate information about epilepsy could be of help.

Adolescent↗

Epilepsy and social identity: the stigma of a chronic neurological disorder.

Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma.

Epilepsy↗

Quality of life of people with epilepsy in Iran, the Gulf, and Near East.

PURPOSE: To study the impact of epilepsy and its treatment on the quality of life of people living in Iran and in countries in the Gulf and Near East. METHODS: Clinical, demographic, and psychosocial details were collected through the use of a self-completed questionnaire distributed to patients attending hospital outpatient clinics. RESULTS: Data were collected from 3,889 people with epilepsy from 10 countries. More than 40% of all respondents had frequent seizures, and reported levels of side effects from medication were high, the most commonly reported being nervousness, headaches, and tiredness. A significant number of respondents reported changing their medications because of side effects or poor seizure control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. A significant number of respondents felt stigmatized by their epilepsy. Reported health status was reduced when compared with that of people without epilepsy, particularly for physical and social functioning and energy and vitality, as assessed by using a generic health status measure, the SF-36. CONCLUSIONS: This is the largest study to date documenting the impact of epilepsy and its treatment in Iran, the Gulf, and Near East regions. Differences were found between the quality-of-life profiles of respondents in this study and those who participated in an earlier parallel study in Europe.

Activities of Daily Living↗

Employers' attitudes to employment of people with epilepsy: still the same old story?

PURPOSE: One area of life quality known to be compromised by having epilepsy is employment, and one factor contributing to the employment problems of people with epilepsy (PWE) is employer attitudes. Much research on this topic is now outdated and given the changing legal, medical, and social contexts in which PWE live, we therefore reexamined employer attitudes in the United Kingdom. METHOD: A mail survey of a random sample of U.K. companies selected to be representative of the 14 U.K. economic regions and proportional to the number of employees. FINDINGS: The overall response rate was 41% (n = 204). Twenty-six percent of respondents reported having experience of employing PWE. Sixteen percent considered that there were no jobs in their company suitable for PWE; 21% thought employing PWE would be "a major issue." Employers were uniformly of the view that PWE, even when in remission, should disclose their condition to a prospective employer. Seizure severity, frequency, and controllability were all considered important features of epilepsy in the context of employment. Epilepsy created high concern to around half of employers, including the likelihood of it being linked to a work-related accident. Employers were willing to make accommodations for PWE, in particular job sharing, temporary reassignment of duties, and flexible working hours. Attitudes to employment of PWE were influenced by company size and type and previous experience of doing so. CONCLUSIONS: We conclude that it is still the same old story for employers' attitudes toward PWE, though happily for PWE, with some room for optimism.

Accidents, Occupational↗

Epilepsy surgery: patient-perceived long-term costs and benefits.

PURPOSE: The goal of this study was to assess the patient-perceived costs and benefits associated with the longer-term outcomes of epilepsy surgery in patients who underwent anterior temporal lobectomy or selective amygdalohippocampectomy. METHODS: Surgery patients who were assessed in 1997 were reassessed in 2003. Demographic, clinical, and psychosocial details were collected using a validated self-completion questionnaire. Data were collected from 67 patients who had undergone surgery. RESULTS: Forty-five percent were seizure-free. There were significant differences (P<0.001) between the seizure-free (SF) and continuous seizure (CS) groups with respect to anxiety, depression, impact of epilepsy, self-esteem, mastery, stigma, affect balance, self-reported health, and quality of life. More SF patients were also employed and driving (P<0.001). Despite these differences there were no differences for regret over surgery but there were differences for satisfaction and success ratings. CONCLUSIONS: Patients who were not SF, in the longer term, had little regret undergoing surgery but were less likely to be satisfied and had a poorer psychosocial profile.

Activities of Daily Living↗

The dos and don'ts of neuropsychological assessment in epilepsy.

Neuropsychologists have a significant role in the assessment, treatment, and rehabilitation of people with epilepsy. This includes providing an assessment of an individual's cognitive strengths and weaknesses with respect to being a candidate for the surgery program, detailing intellectual and memory impairments as part of a rehabilitation service, and documenting specific antiepileptic drug effects as part of routine clinical management. Each of these specific roles requires careful consideration with respect to the potential pitfalls they can present to the neuropsychologist. In this article, we have attempted to identify the most obvious "dos and don'ts" in the neuropsychological assessment of people with epilepsy. These range from issues relating to the reliance of measures, to the failure to document patients' backgrounds, to the importance of considering the psychometric tests that we use. We have attempted to emphasize the importance or value of a well-conducted neuropsychological assessment to the management of the person with epilepsy.

Anticonvulsants↗

Developing a measure to assess attitudes toward epilepsy in the US population.

The aim of this study was to develop an instrument to measure the US public's attitudes toward people with epilepsy and to assess the initial reliability and validity of the instrument. A 46-item attitudinal instrument was developed and tested using a proportional, stratified, national, random-digit dial household telephone survey of adults aged > or = 18 (n=758). Exploratory factor analyses revealed four underlying constructs that accounted for 34.4% of the variance in the factor analysis: negative stereotypes (alpha=0.73); risk and safety concerns (alpha=0.85); work and role expectations (alpha=0.76); and personal fear and social avoidance (alpha=0.79). Knowledge was also assessed; participants with less knowledge about epilepsy had more negative attitudes. The results of these analyses provided evidence for reliability and construct validity of the instrument. Additional tests of the reliability, validity, and factor structure of the scales are necessary to refine the instrument.

Analysis of Variance↗

The perceived health status of people with psychologically derived non-epileptic attack disorder and epilepsy: a comparative study.

While a wealth of literature describes the short and longer term impact of living with epilepsy, there is, in contrast, very little information about the impact of psychologically derived non-epileptic attack disorder (PNEAD). In the absence of any physical disease, some clinicians may assume that this group requires little help. However, evidence suggests that there maybe a significant impact. Therefore, this study has set out to document the effects on perceived health status of PNEAD. We compared 97 people with PNEAD with a sample, case matched for age and gender, of 97 people who had been previously diagnosed with epilepsy. A questionnaire was administered to both groups requesting information about their perceived overall health (SF-36) and their clinical and demographic status. PNEAD patients described a significantly poorer profile of perceived health compared with the epilepsy group. People with PNEAD have substantially impaired perceived health status, to the extent of feeling in poorer health than people with organically explained epilepsy. Clinical interventions are necessary that can improve their perceived health.

Adult↗

A review of subjective impact measures for use with children and adolescents with epilepsy.

PURPOSE: To evaluate measures of epilepsy-specific impact currently available for use with children and adolescents. The relative merits of the different measures are examined. METHOD: Four published epilepsy-specific impact measures, the Epilepsy and Learning Disabilities Quality of Life Scale (ELDQOL), the Health-related Quality of Life in Children with Epilepsy (HRQoLCE); the Impact of Childhood Neurologic Disability Scale (ICND), the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48), and the Quality of Life for Children with Epilepsy (QOLCE) were reviewed. RESULTS: There exist several shortcomings with the available measures on various psychometric criteria with not one of the currently available measures reaching acceptable psychometric standards in terms of reliability and validity. Of note are the particular inadequacies in the validation of scale content; with there being no investigation of the existence of age or ability effects for the items in any of the questionnaires reviewed. CONCLUSION: There is a clear demand for a psychometrically robust measure of subjective impact of epilepsy for children and adolescents, which is applicable to a wide age and ability range. At present, the efforts of the Canadian Pediatric Epilepsy Network with the recent publication of a novel measure holds much promise for the future. It is advocated that further efforts are made to further establish the psychometric properties of these scales and for their integration within a comprehensive outcome model for use in the evaluation of clinical interventions.

Adolescent↗

Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma.

PURPOSE: For many people with epilepsy, the continuing social reality of their condition is as a stigma, thus representing a source of much private grief. To understand fully the nature of epilepsy stigma, it is important to examine attitudes and beliefs of not just the "targets" but also of the "perceivers" of stigma. Perceivers may hold erroneous beliefs and stereotypes that lead them to have negative expectations of people affected by epilepsy. This study examined levels of knowledge and attitudes among perceivers of epilepsy stigma in the U.K. METHODS: A random sample of >1,600 members of the general public was interviewed as part of the bimonthly UK Omnibus Survey. The response rate was 62%. RESULTS: One fourth of informants knew someone with epilepsy and one half had witnessed a seizure. One half agreed that people with epilepsy are treated differently by others, and themes of exclusion, restriction, and nonnormality were commonly cited as reasons for this. Epilepsy ranked second in a range of health conditions, in terms of which would cause them greatest concern if informants had to work with someone so affected. Responses to a series of attitude statements indicated that most held highly favorable attitudes; but one fifth agreed with the statement that people with epilepsy have more personality problems than do others. Responses were influenced by informants' sociodemographic characteristics. CONCLUSIONS: The survey revealed attitudes and knowledge gaps that have the potential for discriminatory behavior. There are implications for how public education campaigns should be implemented, and who should be targeted.

Attitude to Health↗

Compliance and satisfaction with switching from an immediate-release to sustained-release formulation of valproate in people with epilepsy.

OBJECTIVE: The goal of our work was to assess compliance and patient satisfaction with switching from sodium valproate to Depakine Chrono in patients with epilepsy. METHODS: Clinical, demographic, and behavioral details assessing compliance and satisfaction were collected using self-completion questionnaires at the time of inclusion in the study and 3 months after the inclusion day. RESULTS: Data were collected from 2031 respondents from eight European countries. There were significant differences between time 1 and time 2 of the study in seizure frequency, reported side effects, compliance, and patient satisfaction. CONCLUSION: Findings suggest that switching from sodium valproate to Depakine Chrono results in an increase in seizure-free rates, a reduction in reported side effects, an improvement in the level of compliance, and a modest improvement in patient satisfaction.

Adaptation, Psychological↗

Validation of the Wechsler Memory Scale-III in a population of people with intractable temporal lobe epilepsy.

The Wechsler Memory Scale-Third Edition (WMS-III) was developed to overcome the limitations of the Wechsler Memory Scale-Revised and is now routinely used for pre-surgical assessment of memory for patients considering elective surgery for the relief of temporal lobe epilepsy (TLE). We investigated the validity of this relatively new measure in a population of people with resistant TLE. The sample consisted of 99 patients with a diagnosis if TLE in which the epileptogenic focus was clearly identified and localised to either the right or left hemisphere. Patients underwent a full neuropsychological assessment as part of their pre-surgical investigation, including the WMS-III. Patients with right temporal focus had significantly lower scores on the visual immediate and delayed indices of the WMS-III than they did on the corresponding auditory indices. The left temporal focal epilepsy group, however, showed no significant disparity between auditory and visual scores. The overall scores of the WMS-III were significantly lower than the normative data from the WMS-III standardisation samples. Like its predecessor the Wechsler Memory Scale-Revised, the WMS-III has limited value in identifying particular memory deficits associated with either left and right temporal lobe focus. The results of the WMS-III show that it is capable of lateralising to right hemispheric impairment but is more problematic in the assessment of left hemispheric impairment. The visual verbal discrepancy has questionable validity. The search for reliable and valid measures to distinguish between left and right temporal epileptic focus continues.

Adult↗