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Biomedical subjects

A Jacoby

Publications and source records attributed to A Jacoby.

At least 37 records · Page 2Linked to original sources
PubMed1998

Uptake and costs of care for epilepsy: findings from a U.K. regional study.

PURPOSE: Epilepsy is a common neurological condition, with significant resource implications for the health services, but few studies to date have examined the uptake and costs of care for this condition. As part of a large prevalence study of epilepsy conducted in one U.K. Health Region, we investigated both direct and indirect costs of epilepsy care and measured and valued the direct costs. METHODS: Data about service use were obtained from primary physician records and patient questionnaires. Unit costs for each item of resource use were generated from several sources. RESULTS: The greatest direct health care cost is that of hospital-based care. Pharmaceutical services also represent a significant element of the cost of epilepsy, the financial costs of prescribing newly developed antiepileptic drugs (AEDs) being large relative to those of the older drugs; therefore, the benefits derived from their use must be carefully assessed. The importance of good seizure control is amply illustrated by the findings about the differential costs associated with epilepsy of varying severity. The direct costs of caring for people with poorly controlled epilepsy are significant, with more than half the total cost of epilepsy care accounted for by patients with frequent seizures even though this group represented only a quarter of all patients in the present study. CONCLUSIONS: Our data emphasize the importance of optimizing seizure control as a means of reducing the costs of epilepsy, not only to the person with the condition, but also to society.

Adolescent↗
PubMed1997

Learning disability and epilepsy. 2, a review of available outcome measures and position statement on development priorities.

People with epilepsy plus learning disabilities pose a challenge in terms of clinical management and research investigation, and, to date, the measurement of outcomes in this population has been limited. There have been uncertainties concerning both the 'what' and the 'how' of assessment. This paper presents a comprehensive review of available outcome measures across nine domains, i.e. relating to seizures, drugs, cognitive function, behaviour, social functioning, carer functioning, attitudes, motivation and 'quality of life'. This last domain reflects more global measures designed to encompass several assessment strands. The uses and limitations of each scale is discussed and, where data are available, psychometric properties are also presented. The paper concludes with suggestions for the further development of outcome measures in this population.

Epilepsy↗
PubMed1997

Factors influencing compliance with antiepileptic drug regimes.

Failure to comply with drug regimes is prevalent amongst patients with epilepsy and the consequence of this is often an increased risk of further seizures. This paper describes the level of, and influences upon, non-compliance with antiepileptic drug (AED) treatment. A postal questionnaire was sent to an unselected, community-based population of patients with epilepsy. This instrument included questions about patients' AED treatment, any related side-effects, and AED-taking behaviour. Univariate analysis showed that factors associated with compliance were patient age, how important patients felt it was to take drugs as prescribed, whether patients reported feelings of stigma, whether on mono- or polytherapy, whether they were experiencing any side-effects because of AEDs, whether patients had a regular arrangement to see their GP about epilepsy and how easy they found their GP to talk to. Multivariate analysis showed that the strongest predictors of non-compliance were feeling it was not very or not at all important to take AEDs as prescribed, being a teenager, being aged under 60 and being on monotherapy. Further implementation of educational programmes for people with epilepsy would help to improve levels of compliance thereby reducing the risk of unnecessary seizures.

Adaptation, Psychological↗
PubMed1997

Quality of life of people with epilepsy: a European study.

PURPOSE: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible. METHODS: Clinical and demographic details and information about psychosocial functioning was collected using self-completed questionnaires mailed to members of epilepsy support groups. RESULTS: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36. CONCLUSIONS: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.

Age of Onset↗
PubMed1997

Patients' experiences of injury as a result of epilepsy.

PURPOSE: The increased risk of mortality among people with epilepsy is well documented; people with epilepsy are more likely than the general population to die as a result of an accident. Data about incidence of nonfatal accidents and associated factors are not so readily available, even though such accidents are more common than fatal injuries. We report the proportion of people who sustain various injuries during a seizure and the key variables predicting injury. METHODS: Questionnaires were mailed to an unselected, community-based population of patients with epilepsy. The questionnaire included clinical and demographic details, previously validated scales of psychosocial well-being, and questions about seizure-related injuries. RESULTS: Of patients who had had at least one seizure during the previous year, 24% sustained at least one head injury, 16% sustained a burn or scald, 10% a dental injury, and 6% some other fracture. Seizure type, seizure severity, and seizure frequency were key predictors of having sustained at least one of these four seizure-related injuries. Key predictors of burn/scald were seizure severity, seizure frequency and sex; those of head injury were seizure severity and type; that of dental injury was seizure severity; and those of some other fracture were seizure severity, duration of epilepsy, and three or more drug-related adverse effects. CONCLUSIONS: These data help identify significant risk factors associated with seizure-related injuries and so facilitate sensible patient counseling about how the risks of such injuries can be minimized.

Accidents↗
PubMed1996

The associations of psychopathology in epilepsy: a community study.

There is a plethora of studies documenting the association between psychosocial disadvantage and epilepsy but a paucity of studies explaining the precise nature of that relationship. Previous studies have been hampered by methodological problems including small sample size and selection bias. This study examined the aetiology of psychopathology in epilepsy in a cross-sectional community study. A significant proportion of patients were anxious and depressed and many reported side effects of their medication. Stepwise multiple regression techniques were employed to examine the relationship between clinical, demographic and psychosocial variables. Results indicated that psychosocial variables were the best predictors of each other but when these were taken into account, patient perceived seizure severity was an important predictor variable in understanding the relationship between epilepsy and psychosocial functioning.

Adult↗
PubMed1996

The clinical course of epilepsy and its psychosocial correlates: findings from a U.K. Community study.

As part of a large community-based study, we retrospectively examined the clinical course of epilepsy in an unselected population of people who had a recent history of seizures or were receiving antiepileptic drugs (AEDs). Clinical information was collected from medial records, and information about psychosocial functioning was obtained by means of postal questionnaires sent to identified subjects. The response rate to the postal questionnaire was 71%. There were some deficiencies in the recording of clinical data, which is not unusual since data were taken from records held by primary physicians rather than from hospital clinics. Nevertheless, findings regarding the clinical course of epilepsy corresponded to those of earlier studies. Fifty-seven percent of the sample had had at least a 2-year seizure-free period and 46% of subjects were currently in a remission of at least 2-year duration. There was a clear relationship between current seizure frequency and levels of anxiety and depression, perceived impact of epilepsy, perceived stigma, and marital and employment status. The relationship of seizure frequency and other clinical variables to psychosocial function was explored by multivariate analysis techniques. The amount of variation in scores on the various measures of function accounted for by the clinical variables was small. The most important predictor was current seizure activity, which was the first variable to enter the regression analyses for six of the eight measures of psychosocial function considered. Age at epilepsy onset also emerged as a significant predictor for depression, stigma, and marital status. In individuals with epilepsy in remission, there was little evidence that psychosocial functioning was associated with length of remission, a finding which may in part reflect the nature of this study population. The results indicate that there are several more important predictors of psychopathology and social dysfunction in epilepsy and suggest several implications for treatment interventions.

Adult↗
PubMed1996

Patients' experiences of and satisfaction with care for their epilepsy.

PURPOSE: To determine condition-specific satisfaction with care, we studied patients' experience of general practitioner (primary physician) and hospital clinic care for their epilepsy and their views about the provision of information concerning the management of their condition. METHODS: A postal questionnaire was sent to an unselected, community-based population of patients with epilepsy. In addition to clinical and demographic details and previously validated scales of psychosocial well-being, the instrument contained a series of questions about patients' experiences and views of the care they received for epilepsy from both general practice and the hospital services. RESULTS: Doctors' interpersonal skills were the most influential factors affecting both patient satisfaction overall and the likelihood that doctors might discuss with patients certain clinical and social issues surrounding the management of the patient's condition. A sizable proportion of patients reported that they received insufficient information about epilepsy, both from hospital doctors and general practitioners. CONCLUSIONS: Patients with epilepsy place great importance on having a doctor who is approachable, communicative, and knowledgeable and on receiving adequate information about their condition. Clinicians may need to be made more aware of the importance of accessibility and sensitivity to the nonclinical needs of their patients. Such easily implemented changes in the delivery of care would improve services in the United Kingdom for people with epilepsy.

Adolescent↗
PubMed1996

Assessing quality of life in patients with epilepsy.

The importance of quality-of-life (QOL) assessments in providing quantified information about the impact of chronic illness and its treatment is now generally accepted. For epilepsy, QOL assessment is a relatively recent development, but it is increasingly included within clinical trial protocols. Clinical trials in epilepsy that have included a comprehensive QOL assessment, although still relatively few in number, have examined the effectiveness both of broad management policies and of individual drug therapies. There are a number of important conceptual, methodological and practical issues behind the measurement of quality of life as an outcome of care in epilepsy that are being addressed through current efforts to develop standardised QOL instruments. In trying to assess quality of life in epilepsy, as in any other condition, it is important to satisfy the universal requirements of a scientific instrument-that it be valid, reliable, sensitive in change and practical. To date, the main 'formal' approaches to QOL assessment in epilepsy have involved the development of a novel QOL measure from first principles, customising of a previously developed generic measure, identification of a battery of generic and disease-specific scales addressing specific QOL domains, and adoption of an individual patient-generated approach. These various efforts have produced a battery of potentially valuable tools and approaches. Although QOL assessment is now mainly on the epilepsy research agenda, some important challenges remain to be met. These include the development of comprehensive, age-related measures for children with epilepsy, further investigation of the psychometric properties of the available measures for adults, issues of cross-cultural application and use with proxy informants, and the development of utility-based measures.

Adult↗
PubMed1996

A general practice records audit of the process of care for people with epilepsy.

BACKGROUND: The appropriateness of epilepsy as a topic for general practice audit activity has been emphasized, but few audits have been undertaken to data and those that have are small scale. Historically, management of epilepsy has been a neglected area, and services for people with epilepsy remain generally poor. AIM: The study was designed to examine the process of care for people with epilepsy through a region-wide audit of general practitioner records. METHOD: General practitioners in 31 randomly selected general practices in one UK health region undertook a notes audit for all patients identified as having active epilepsy (patients who had had seizures in the last 2 years, or were currently seizure-free but on antiepileptic medication). A standard pro forma was used to collect information relating to diagnosis, drug treatment, and primary and secondary care contacts. RESULTS: Recording of information in the notes was generally good, but poor for some key items essential to the effective management of the condition; results suggest that a number of recommendations about provision of care for epilepsy are not being met: in particular, EEG and CT investigations often appear poorly directed; prescribed antiepileptic therapy is not always optimal; significant numbers of patients are being treated in hospital by non-neurologists; there is little evidence of any regular review being undertaken by general practitioners of their patients with epilepsy; and counselling about the non-clinical aspects of epilepsy often appears inadequate. CONCLUSIONS: Despite recommendations in a number of recent reports, gaps and inconsistencies in epilepsy care persist, both at the primary and secondary level. The means by which such shortcomings can be reduced (e.g. by specialist epilepsy nurses working across the primary-secondary care interface) should now be systematically examined. The study has highlighted a need for evidence-based guidelines which span the primary-secondary care interface and clarify the contribution of the various practitioners involved in the provision of care for people with epilepsy.

Adolescent↗
PubMed1995

Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life.

We studied 31 previously validated and newly developed generic and epilepsy-specific scales to evaluate their usefulness for assessing the impact of epilepsy and anti-epileptic drug (AED) therapy on health-related quality of life (HRQOL). Included were the MOS SF-36 Health Survey, additional measures of mental health, cognition, epilepsy-specific perception of control, behavioural problems, distress, worries and experiences, the Liverpool Epilepsy Impact and Seizure Severity scales, and a patient-completed symptom checklist. Questionnaires were completed twice by 136 patients on AED therapy in a multicentre study in the UK. Validity was assessed in relation to disease severity, defined as time since last seizure, and to patient-reported symptoms. Statistical analyses to estimate the contribution of HRQOL information of each scale relative to that of others were conducted. The 171-item questionnaire could be completed by out-patients with epilepsy with good data quality. With few exceptions, generic and epilepsy-specific measures satisfied psychometric tests of hypothesized item groupings and scale score reliability (internal consistency and test-retest reliability) and differentiated well between groups of patients differing in time since last seizure and in symptom impact, regardless of time since last seizure. However, scales differed widely in their validity in discriminating between groups of patients known to differ clinically. The SF-36 Role Physical scale best discriminated among groups differing in disease severity. The epilepsy-specific Mastery, Impact, Experience, Worry, Distress, and Agitation scales were among the 10 best measures in discriminating among groups differing in disease severity. Generic measures, especially measures of social and role functioning and mental health, were best at differentiating groups of patients differing in symptom impact. Recommendations are offered for concepts and specific scales most likely to be useful in future studies of the HRQOL burden of epilepsy and the HRQOL benefits of AED therapy.

Adolescent↗
PubMed1995

Impact of epilepsy on employment status: findings from a UK study of people with well-controlled epilepsy.

This paper examines the current employment status and recent employment history of 494 individuals with epilepsy whose seizures were well-controlled or in remission. Information about employment status and history was obtained by means of self-completion questionnaires, sent to eligible subjects by post. The sampling frame from which subjects were recruited were neurology out-patient departments across the UK. The majority of subjects had epilepsy in remission: only 15% had had a seizure in the last year and only 25% reported one in the last two years. A high proportion of respondents were currently in employment. Of those who were not, few attributed this to their epilepsy; nor did epilepsy seem to have a significant impact on recent employment history. In spite of the lack of evidence of any actual discrimination, a third of respondents nevertheless felt their condition affected their ability to obtain employment. The findings from earlier studies of high unemployment rates partly reflect bias in the samples studied. Our data provide evidence that where seizures are well-controlled and uncomplicated by other handicap, people with epilepsy do not generally experience problems with employment.

Age Distribution↗
PubMed1994

A solid phase enzyme linked immunofiltration assay for secretory leucocyte proteinase inhibitor.

A solid phase enzyme linked immunosorbent filtration assay (ELIFA) has been developed for secretory leucocyte proteinase inhibitor (SLPI) utilising polyclonal anti-recombinant SLPI (anti-rSLPI) and polyclonal anti-bronchial mucus proteinase inhibitor (anti-BLPI) IgG samples. Millipore HATF nitrocellulose 96-well plates were used as receptacles for the assay and a commercial goat anti-rabbit IgG alkaline phosphatase conjugate was used as a secondary antibody for quantitation of levels of primary antibodies bound to rSLPI in the plate wells. Antigen bound to the HATF plates efficiently and the washing/blocking steps were simplified by vacuum filtration of samples resulting in a rapid and convenient assay system. The ELIFA was also sensitive and a detection limit of 0.1 ng SLPI/well was achieved using either anti-SLPI or anti-BLPI as primary antibodies. This assay was used to demonstrate the production of SLPI at moderate levels (0.5-3 ng/ml media) by human articular chondrocytes grown in monolayer culture.

Adult↗
PubMed1994

Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission.

Epilepsy is, in the majority of cases, a short-lived and self-limiting clinical condition. However, individuals labelled as epileptic frequently continue to feel stigmatised, even after their seizures remit. This paper describes the nature and extent of stigma in a group of individuals with epilepsy in remission. The distinction between 'felt' and 'enacted' stigma is examined, and found to be supported by the data.

Adult↗
PubMed1993

The initial development of a health-related quality of life model as an outcome measure in epilepsy.

Patients with refractory epilepsy, despite no fixed physical deficit, are often socially and psychologically handicapped. Currently available outcome measures for epilepsy do not adequately address these manifestations or their influence on well-being and quality of life. A patient-based health-related quality of life (HRQL) model for epilepsy including physical, social and psychological domains was constructed. It contains previously validated measures of anxiety, depression, happiness, overall mood, self-esteem, mastery, social satisfaction and general health and a specifically designed seizure severity scale with patient- and carer-based components. The psychometric properties of this model were evaluated in the context of the trial of a potential new antiepileptic drug. All the scales, except the Social Problems Questionnaire, have acceptable internal consistency (alpha 0.69-0.85) in this patient population. Construct validity is indicated by the ability of the scales to differentiate between groups of patients predicted to have different levels of psychosocial function. Treatment effects were detected by the patient (P = 0.017) and carers (P = 0.035) subscales of the seizure severity scale, the happiness (P = 0.003) and the mastery (P = 0.003) scales. Despite obvious deficiencies preliminary analyses are encouraging. This model provides a framework for investigating the complex interaction between the physical, social and psychological manifestations of epilepsy. The model has potential as an outcome measure for use in longitudinal studies and as a measure of disability for use in cross-sectional studies designed to compare quality of life in different populations of people with epilepsy.

Activities of Daily Living↗
PubMed1993

Measuring the impact of epilepsy: the development of a novel scale.

The impact of a chronic illness is experienced not only through its physical symptoms, but also as a result of its effect on psychosocial functioning. In the case of an illness such as epilepsy, where the physical manifestations are transient, the psychosocial consequences may, with time, come to be of greater concern. We have been involved in developing a quality of life model for epilepsy. As part of the refinement of the initial model, we have devised a novel scale to measure the impact of the condition on a number of different aspects of daily life. The scale was administered to 75 patients attending an epilepsy out-patient clinic. Initial analysis of its psychometric properties is encouraging, although the inclusion of an item relating to employment reduced the scale's reliability. As a result, the wording of the existing item has been amended and an additional item has been incorporated. We hope the scale will be useful in investigations of treatment for epilepsy and of its psychosocial aspects.

Adolescent↗