Ann Jacoby | University of Liverpool (original) (raw)
Papers by Ann Jacoby
Epilepsia, 2022
ObjectiveTo review the evidence of felt and enacted stigma and attitudes toward persons living wi... more ObjectiveTo review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.MethodsThirteen databases were searched (1985–2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed “felt” or “enacted” stigma and “attitudes” toward persons living with epilepsy.ResultsOf 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an “undesirable difference” and so anticipated being treated differently. Fe...
Clinical pharmacology and therapeutics, Jan 11, 2018
Regulatory decisions may be enhanced by incorporating patient preferences for drug benefit and ha... more Regulatory decisions may be enhanced by incorporating patient preferences for drug benefit and harms. This study demonstrates a method of weighting clinical evidence by patients' benefit-risk preferences. Preference weights, derived from discrete choice experiments, were applied to clinical trial data to estimate the expected utility of alternative drugs. In a case study, the rank ordering of antiepileptic drugs (AEDs), as indicated from clinical studies, was compared with ordering based on weighting clinical evidence by patients' preferences. A statistically significant change in rank ordering of AEDs was observed for women of childbearing potential who were prescribed monotherapy for generalized or unclassified epilepsy. Rank ordering inferred from trial data, valproate > topiramate > lamotrigine, was reversed. Modeling the expected utility of drugs might address the need to use more systematic, methodologically sound approaches to collect patient input that can furt...
British Journal of Clinical Pharmacology, 2015
Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of ... more Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of cutaneous adverse drugs reactions (ADRs) to carbamazepine. This study aimed to ascertain the preferences of patients and clinicians to inform carbamazepine pharmacogenetic testing services. Methods: Attributes of importance to people with epilepsy and neurologists were identified through interviews and from published sources. Discrete choice experiments (DCEs) were conducted in 82 people with epilepsy and 83 neurologists. Random-effects logit regression models were used to determine the importance of the attributes and direction of effect. Results: In the patient DCE, all attributes (seizure remission, reduction in seizure frequency, memory problems, skin rash and rare, severe ADRs) were significant. The estimated utility of testing was greater, at 0.52 (95% CI, 0.19 to 1.00) than not testing at 0.33 (95% CI,-0.07 to 0.81). In the physician DCE, cost, inclusion in the British National Formulary, coverage, negative predictive value (NPV), and positive predictive value (PPV) were significant. Marginal rates of substitution indicated that neurologists were willing to pay £5.87 for a 1 percentage point increase in NPV and £3.99 for a 1 percentage point increase in PPV. Conclusion: The inclusion of both patients' and clinicians' perspectives represents an important contribution to the understanding of preferences towards pharmacogenetic testing prior to initiating carbamazepine. Both groups identified different attributes but had generally consistent preferences. Patients' acceptance of a decrease in treatment benefit for a reduced chance of severe ADRs adds support for the implementation of HLA-A*31:01 testing in routine practice.
Quality of Life Research, 1999
A considerable literature is now available on the applications and psychometric properties of the... more A considerable literature is now available on the applications and psychometric properties of the MOS SF-36 Health Survey. In epilepsy, the SF-36 has been used as a health status measure in its own right and as the stem for two condition-specific measures. This paper replicates for epilepsy previous work to support use of the SF-36 across a range of clinical
Epilepsy & behavior : E&B, 2009
The brushtail possum is a significant conservation pest and major vector of bovine tuberculosis i... more The brushtail possum is a significant conservation pest and major vector of bovine tuberculosis in New Zealand. Previous control simulation studies have suggested that aerial control with bait containing sodium monofluoroacetate (1080) is the most cost-effective large-scale possum control strategy. However, there is a growing awareness that the survivors of 1080 control can develop ‘bait shyness’, and this can markedly alter the efficacy of ongoing 1080 control operations. Several alternative toxicants are registered for possum control but all are ground based, differ in their mode of action, and are more expensive than aerial 1080 control. A new possum control simulation model was developed to assist in identifying the most cost-effective control strategy that would achieve a sustained 80% population reduction, given bait-shy behaviour and immigration from adjacent noncontrolled areas. The simulation results indicated that it is possible to achieve a sustained 80% population reduction (over a 10-year period) using a 1080-based control strategy, provided at least 90% of all ‘susceptible’ possums are killed in each control operation. In the event of an unsuccessful 1080 control operation (i.e., only a 60% kill), cyanide bait plus trapping, or brodifacoum bait provided the most cost-effective strategy of ‘mopping up’ 1080 bait-shy survivors. However, sufficient numbers of traps must accompany the cyanide bait to ensure that the majority of 1080 bait-shy possums are targeted. Sensitivity analysis indicated that the most important variable influencing the overall success of any control strategies was the rate of re-colonization following control. With the high rates of immigration that are sometimes observed in small forest reserves (i.e., <100 ha), it was not possible to sustain an 80% population reduction using any combination of toxicants. However, higher rates of immigration are probably exceptional and the rate used in these simulations is considered more typical, particularly for moderate-to-large forest stands where most possum control is conducted.
The British journal of general practice : the journal of the Royal College of General Practitioners, 1996
The appropriateness of epilepsy as a topic for general practice audit activity has been emphasize... more 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. The study was designed to examine the process of care for people with epilepsy through a region-wide audit of general practitioner records. 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. Recording of information in the notes was generally good, but poor for some key items essential to the effective management of the cond...
BMJ open, 2014
There is growing interest in the potential benefits of public involvement (PI) in health and soci... more There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. The UK health and social care research community. Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whe...
Health Technology Assessment, 2007
T he NHS R&D Health Technology Assessment (HTA) Programme was set up in 1993 to ensure that high-... more T he NHS R&D Health Technology Assessment (HTA) Programme was set up in 1993 to ensure that high-quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most efficient way for those who use, manage and provide care in the NHS. The research reported in this monograph was commissioned by the HTA Programme on behalf of the National Institute for Clinical Excellence (NICE). Rapid reviews are completed in a limited time to inform the appraisal and guideline development processes managed by NICE. The review brings together evidence on key aspects of the use of the technology concerned. However, appraisals and guidelines produced by NICE are informed by a wide range of sources. The research reported in this monograph was funded as project number 00/01/01. The views expressed in this publication are those of the authors and not necessarily those of the HTA Programme, NICE or the Department of Health. The editors wish to emphasise that funding and publication of this research by the NHS should not be taken as implicit support for any recommendations made by the authors. Criteria for inclusion in the HTA monograph series Reports are published in the HTA monograph series if (1) they have resulted from work commissioned for the HTA Programme, and (2) they are of a sufficiently high scientific quality as assessed by the referees and editors. Reviews in Health Technology Assessment are termed 'systematic' when the account of the search, appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others.
Seizure, 2010
Introduction: Tracing the recent history of the 'falling sickness' We were very honoured and exci... more Introduction: Tracing the recent history of the 'falling sickness' We were very honoured and excited to be approached to edit this special edition of Seizure, which marks the 60th anniversary of the founding of the UK patient organisation, Epilepsy Action (EA, formerly The British Epilepsy Association). We have both been involved with the work of EA over what is now a considerable period of time-as research funding recipients, research collaborators, members of the Council of Management and Research Committee, members of the Research Advisory Group, supporters and-we like to think-as friends. What better way, we agreed, to celebrate EA's history and achievements, than to edit such a special edition-especially given that Seizure was founded by EA and remains its official academic journal. So, we want to start by thanking Markus Reuber and Simon Wigglesworth for proposing us as editors. We are very glad we said yes to the request-working with all our contributors and reading/editing their excellent and thought-provoking contributions has been one of the most rewarding pieces of work we have ever done and we are very proud of the end product. We hope readers will enjoy it as much as we have. The aim of this Special Edition was to highlight changes in the way epilepsy has been thought about and dealt with over the 60 years of EA's existence and to speculate a little on what the next 60 years holds for the clinical and social management of epilepsy. We also wanted to highlight what has changed and what still needs to change for people with epilepsy, not just in the UK but worldwide. So-this is not a systematic 'account' of epilepsy, wherein we cover all the epidemiological, neurobiological, clinical, psychiatric/ psychological and social bases-rather we wanted the content to tune with EA's stated aims to: Raise and maintain awareness about epilepsy. Educate people about the facts about epilepsy and improve their understanding of the condition. Bring about permanent change for the social and medical benefit of people with epilepsy. Provide advice and information about epilepsy. Promote all types of research into epilepsy and undertake social and medical research into epilepsy. Ensure that epilepsy is fully understood and the needs of people with epilepsy are supported.
Seizure, 1997
People with epilepsy plus learning disabilities pose a challenge in terms of clinical management ... more 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.
Neurology, 2011
Objective: Adverse effects (AEs) are a major concern when starting antiepileptic drug (AED) treat... more Objective: Adverse effects (AEs) are a major concern when starting antiepileptic drug (AED) treatment. This study quantified the extent to which AE reporting in people with new-onset seizures started on AEDs is attributable to the medication per se, and investigated variables contributing to AE reporting. Methods: We pooled data from 2 large prospective studies, the Multicenter Study of Early Epilepsy and Single Seizures and the Northern Manhattan Study of incident unprovoked seizures, and compared adverse event profile (AEP) total and factor scores between adult cases prescribed AEDs for new-onset seizures and untreated controls, adjusting for several demographic and clinical variables. Differences in AEP scores were also tested across different AED monotherapies and controls, and between cases and controls grouped by number of seizures. Results: A total of 212 cases and 206 controls were identified. Most cases (94.2%) were taking low AED doses. AEP scores did not differ significantly between the 2 groups. Depression, female gender, symptomatic etiology, younger seizure onset age, Ն2 seizures, and history of febrile seizures were associated with higher AEP scores. There were no significant differences in AEP scores across different monotherapies and controls. AEP scores increased in both cases and controls with increasing number of seizures, the increment being more pronounced in cases. Conclusions: When AED treatment is started at low doses following new-onset seizures, AE reporting does not differ from untreated individuals. Targeting specific factors affecting AE reporting could lead to improved tolerability of epilepsy treatment. Neurology ® 2011;76:273-279 GLOSSARY AE ϭ adverse effect; AED ϭ antiepileptic drug; AEP ϭ Adverse Event Profile; CBZ ϭ carbamazepine; DIS ϭ Diagnostic Interview Schedule; DISC ϭ Diagnostic Interview Schedule for Children; DSM-IV ϭ Diagnostic and Statistical Manual of Mental Disorders, 4th edition; HADS ϭ Hospital Anxiety and Depression Scale; LEV ϭ levetiracetam; LTG ϭ lamotrigine; MESS ϭ Multicenter Study of Early Epilepsy and Single Seizures; NMS ϭ Northern Manhattan Study; PHT ϭ phenytoin; VPA ϭ valproic acid. For individuals with newly diagnosed epilepsy starting antiepileptic drug (AED) treatment, adverse effects (AEs) are the most common concern. Cognitive impairment, coordination disturbances, sedation problems, and mood dysfunction affect up to 60% of people taking AEDs, 1,2 adversely impacting everyday functioning. 3 Idiosyncratic AEs are more frequent with AEDs than with other agents, 4 and lead to substantial morbidity and mortality. 5 Counseling about tolerability and safety of AEDs relies on information from randomized trials and observational studies. Most randomized trials, however, are designed to address regulatory requirements 6 and their results are not easily applicable to routine practice. 7,8 In particular, these trials use strict inclusion/exclusion criteria, apply minimally
The Lancet, 2007
Background-Carbamazepine is widely accepted as a drug of first choice for patients with partial o... more Background-Carbamazepine is widely accepted as a drug of first choice for patients with partial onset seizures. Several newer drugs possess efficacy against these seizure types but previous randomised controlled trials have failed to inform a choice between these drugs. We aimed to assess efficacy with regards to longer-term outcomes, quality of life, and health economic outcomes. Methods-SANAD was an unblinded randomised controlled trial in hospital-based outpatient clinics in the UK. Arm A recruited 1721 patients for whom carbamazepine was deemed to be standard treatment, and they were randomly assigned to receive carbamazepine, gabapentin, lamotrigine, oxcarbazepine, or topiramate. Primary outcomes were time to treatment failure, and time to 12-months remission, and assessment was by both intention to treat and per protocol. This study is registered as an International Standard Randomised Controlled Trial, number ISRCTN38354748. Findings-For time to treatment failure, lamotrigine was significantly better than carbamazepine (hazard ratio [HR] 0•78 [95% CI 0•63-0•97]), gabapentin (0•65 [0•52-0•80]), and topiramate (0•64 [0•52-0•79]), and had a non-significant advantage compared with oxcarbazepine (1•15 [0•86-1•54]). For time to 12-month remission carbamazepine was significantly better than gabapentin (0•75 [0•63-0•90]), and estimates suggest a non-significant advantage for carbamazepine against lamotrigine (0•91 [0•77-1•09]), topiramate (0•86 [0•72-1•03]), and oxcarbazepine (0•92 [0•73-Marson et al.
Health Expectations, 2013
BackgroundMuch has been written about public involvement (PI) in health and social care research,... more BackgroundMuch has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.ObjectiveThe narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.MethodsWe undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks.ResultsThree overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; acco...
Epilepsy & Behavior, 2012
Epilepsy is a common chronic neurological disease. One of its characteristics is that it can brin... more Epilepsy is a common chronic neurological disease. One of its characteristics is that it can bring severe stigma for patients. At the same time as controlling the epileptic seizures, taking appropriate measures to reduce the stigma of epilepsy is an important aspect of any comprehensive intervention strategy. We examined the views of 106 participants of different target groups, including patients with epilepsy (PWE), their family members, neighbors, teachers, employers, community administrators, doctors and nurses, using one to one in-depth interviews and group discussions. The discussions covered the following aspects related to epilepsy: the participants' understanding of epilepsy, the patients' own perception of epilepsy, the attitudes of surrounding people, the social and cultural environment, the social support available to them, and government regulations and policies. We found that the stigma of epilepsy is a very negative selffeeling from the patients' perspective. Many complex and diverse factors determine its formation and severity. The stigma of epilepsy, in a particular social and cultural context, can be demonstrated in the internalized, interpersonal and institutional levels. Hence, we suggest that effective measures to alleviate stigma should be based on ways of eliminating factors which cause institutional stigma. Additionally, depending on the specific circumstances of PWE, a personalized approach to eliminate factors which cause internalized and interpersonal stigma needs to be adopted. Only by addressing impacting factors at each of these three levels, can the stigma of PWE in China be alleviated or even eliminated.
Epilepsy & Behavior, 2003
Objective. The goal of our work was to assess compliance and patient satisfaction with switching ... more 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.
Epilepsy & Behavior, 2011
To identify the possible sources of stigma of epilepsy in key informant groups, "miniethnographic... more To identify the possible sources of stigma of epilepsy in key informant groups, "miniethnographic" studies were conducted in rural and urban locations in China. Data from 45 semistructured interviews and 8 focus group discussions (6 persons each) were analysed to investigate the world experienced by people with epilepsy. Underpinned by a social constructionist approach to data analysis, emerging themes were identified with the use of computer-assisted data analysis (NVivo 8). A hierarchical model was then constructed, to include: Practical Level issues: attitudes to risk, attitudes towards costs of epilepsy; and Cultural Level issues: the contrast between rurality and tradition and urbanization and modernity in the Chinese context. The analysis enriches current research on factors and sources of stigma of epilepsy and highlights issues for future practice.
Epilepsy & Behavior, 2009
Reis. We wish to thank the participants who dedicated their time and energy to take part in this ... more Reis. We wish to thank the participants who dedicated their time and energy to take part in this study. We also thank the US National Institutes of Health for its financial support (Grant Number R21 NS048839-02). The NIH had no role in writing this article or in the decision to submit it for publication. The CREST Project operates under the auspices of the Global Campaign Against Epilepsy.
Epilepsy & Behavior, 2009
We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy and di... more We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy and disclosure in Vietnam by using in depth interviews with people with epilepsy (PWE) and their family members. We found that although participants prefer Western treatment methods more than traditional ones, they experience problems in accessing different kinds of anti-epileptic drugs (AEDs) and higher-level treatment facilities and with respect to treatment expenses. The impact of epilepsy can be observed in a wide range of daily living activities which include working, education, marriage prospects and family formation. Although both families and society at large do not hold negative attitudes toward epilepsy, most PWE reported a sense of burden to others. Both PWE and family members generally prefer disclosing epilepsy rather than concealing it from others. Our findings strongly suggest a need for different types of AEDs, and supporting information for PWE, family members and general public about epilepsy.
Epilepsy & Behavior, 2007
Few suitable instruments exist for use with people, especially children, with both epilepsy and l... more 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 paper reports on the final psychometric testing phase of ELDQOL. ELDQOL consists of 70 items covering seizure severity, seizure-related injuries, AED side-effects, behaviour, mood, physical, cognitive and social functioning, parental concern, communication, overall QOL 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 and test-retest reliability, and validity. The final version of ELDQOL has very good evidence of reliability and validity, making it a promising instrument for assessing QOL in children/young adults with epilepsy and learning disability.
Epilepsia, 2022
ObjectiveTo review the evidence of felt and enacted stigma and attitudes toward persons living wi... more ObjectiveTo review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.MethodsThirteen databases were searched (1985–2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed “felt” or “enacted” stigma and “attitudes” toward persons living with epilepsy.ResultsOf 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an “undesirable difference” and so anticipated being treated differently. Fe...
Clinical pharmacology and therapeutics, Jan 11, 2018
Regulatory decisions may be enhanced by incorporating patient preferences for drug benefit and ha... more Regulatory decisions may be enhanced by incorporating patient preferences for drug benefit and harms. This study demonstrates a method of weighting clinical evidence by patients' benefit-risk preferences. Preference weights, derived from discrete choice experiments, were applied to clinical trial data to estimate the expected utility of alternative drugs. In a case study, the rank ordering of antiepileptic drugs (AEDs), as indicated from clinical studies, was compared with ordering based on weighting clinical evidence by patients' preferences. A statistically significant change in rank ordering of AEDs was observed for women of childbearing potential who were prescribed monotherapy for generalized or unclassified epilepsy. Rank ordering inferred from trial data, valproate > topiramate > lamotrigine, was reversed. Modeling the expected utility of drugs might address the need to use more systematic, methodologically sound approaches to collect patient input that can furt...
British Journal of Clinical Pharmacology, 2015
Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of ... more Pharmacogenetic studies have identified the presence of the HLA-A*31:01 allele as a predictor of cutaneous adverse drugs reactions (ADRs) to carbamazepine. This study aimed to ascertain the preferences of patients and clinicians to inform carbamazepine pharmacogenetic testing services. Methods: Attributes of importance to people with epilepsy and neurologists were identified through interviews and from published sources. Discrete choice experiments (DCEs) were conducted in 82 people with epilepsy and 83 neurologists. Random-effects logit regression models were used to determine the importance of the attributes and direction of effect. Results: In the patient DCE, all attributes (seizure remission, reduction in seizure frequency, memory problems, skin rash and rare, severe ADRs) were significant. The estimated utility of testing was greater, at 0.52 (95% CI, 0.19 to 1.00) than not testing at 0.33 (95% CI,-0.07 to 0.81). In the physician DCE, cost, inclusion in the British National Formulary, coverage, negative predictive value (NPV), and positive predictive value (PPV) were significant. Marginal rates of substitution indicated that neurologists were willing to pay £5.87 for a 1 percentage point increase in NPV and £3.99 for a 1 percentage point increase in PPV. Conclusion: The inclusion of both patients' and clinicians' perspectives represents an important contribution to the understanding of preferences towards pharmacogenetic testing prior to initiating carbamazepine. Both groups identified different attributes but had generally consistent preferences. Patients' acceptance of a decrease in treatment benefit for a reduced chance of severe ADRs adds support for the implementation of HLA-A*31:01 testing in routine practice.
Quality of Life Research, 1999
A considerable literature is now available on the applications and psychometric properties of the... more A considerable literature is now available on the applications and psychometric properties of the MOS SF-36 Health Survey. In epilepsy, the SF-36 has been used as a health status measure in its own right and as the stem for two condition-specific measures. This paper replicates for epilepsy previous work to support use of the SF-36 across a range of clinical
Epilepsy & behavior : E&B, 2009
The brushtail possum is a significant conservation pest and major vector of bovine tuberculosis i... more The brushtail possum is a significant conservation pest and major vector of bovine tuberculosis in New Zealand. Previous control simulation studies have suggested that aerial control with bait containing sodium monofluoroacetate (1080) is the most cost-effective large-scale possum control strategy. However, there is a growing awareness that the survivors of 1080 control can develop ‘bait shyness’, and this can markedly alter the efficacy of ongoing 1080 control operations. Several alternative toxicants are registered for possum control but all are ground based, differ in their mode of action, and are more expensive than aerial 1080 control. A new possum control simulation model was developed to assist in identifying the most cost-effective control strategy that would achieve a sustained 80% population reduction, given bait-shy behaviour and immigration from adjacent noncontrolled areas. The simulation results indicated that it is possible to achieve a sustained 80% population reduction (over a 10-year period) using a 1080-based control strategy, provided at least 90% of all ‘susceptible’ possums are killed in each control operation. In the event of an unsuccessful 1080 control operation (i.e., only a 60% kill), cyanide bait plus trapping, or brodifacoum bait provided the most cost-effective strategy of ‘mopping up’ 1080 bait-shy survivors. However, sufficient numbers of traps must accompany the cyanide bait to ensure that the majority of 1080 bait-shy possums are targeted. Sensitivity analysis indicated that the most important variable influencing the overall success of any control strategies was the rate of re-colonization following control. With the high rates of immigration that are sometimes observed in small forest reserves (i.e., <100 ha), it was not possible to sustain an 80% population reduction using any combination of toxicants. However, higher rates of immigration are probably exceptional and the rate used in these simulations is considered more typical, particularly for moderate-to-large forest stands where most possum control is conducted.
The British journal of general practice : the journal of the Royal College of General Practitioners, 1996
The appropriateness of epilepsy as a topic for general practice audit activity has been emphasize... more 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. The study was designed to examine the process of care for people with epilepsy through a region-wide audit of general practitioner records. 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. Recording of information in the notes was generally good, but poor for some key items essential to the effective management of the cond...
BMJ open, 2014
There is growing interest in the potential benefits of public involvement (PI) in health and soci... more There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. The UK health and social care research community. Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whe...
Health Technology Assessment, 2007
T he NHS R&D Health Technology Assessment (HTA) Programme was set up in 1993 to ensure that high-... more T he NHS R&D Health Technology Assessment (HTA) Programme was set up in 1993 to ensure that high-quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most efficient way for those who use, manage and provide care in the NHS. The research reported in this monograph was commissioned by the HTA Programme on behalf of the National Institute for Clinical Excellence (NICE). Rapid reviews are completed in a limited time to inform the appraisal and guideline development processes managed by NICE. The review brings together evidence on key aspects of the use of the technology concerned. However, appraisals and guidelines produced by NICE are informed by a wide range of sources. The research reported in this monograph was funded as project number 00/01/01. The views expressed in this publication are those of the authors and not necessarily those of the HTA Programme, NICE or the Department of Health. The editors wish to emphasise that funding and publication of this research by the NHS should not be taken as implicit support for any recommendations made by the authors. Criteria for inclusion in the HTA monograph series Reports are published in the HTA monograph series if (1) they have resulted from work commissioned for the HTA Programme, and (2) they are of a sufficiently high scientific quality as assessed by the referees and editors. Reviews in Health Technology Assessment are termed 'systematic' when the account of the search, appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others.
Seizure, 2010
Introduction: Tracing the recent history of the 'falling sickness' We were very honoured and exci... more Introduction: Tracing the recent history of the 'falling sickness' We were very honoured and excited to be approached to edit this special edition of Seizure, which marks the 60th anniversary of the founding of the UK patient organisation, Epilepsy Action (EA, formerly The British Epilepsy Association). We have both been involved with the work of EA over what is now a considerable period of time-as research funding recipients, research collaborators, members of the Council of Management and Research Committee, members of the Research Advisory Group, supporters and-we like to think-as friends. What better way, we agreed, to celebrate EA's history and achievements, than to edit such a special edition-especially given that Seizure was founded by EA and remains its official academic journal. So, we want to start by thanking Markus Reuber and Simon Wigglesworth for proposing us as editors. We are very glad we said yes to the request-working with all our contributors and reading/editing their excellent and thought-provoking contributions has been one of the most rewarding pieces of work we have ever done and we are very proud of the end product. We hope readers will enjoy it as much as we have. The aim of this Special Edition was to highlight changes in the way epilepsy has been thought about and dealt with over the 60 years of EA's existence and to speculate a little on what the next 60 years holds for the clinical and social management of epilepsy. We also wanted to highlight what has changed and what still needs to change for people with epilepsy, not just in the UK but worldwide. So-this is not a systematic 'account' of epilepsy, wherein we cover all the epidemiological, neurobiological, clinical, psychiatric/ psychological and social bases-rather we wanted the content to tune with EA's stated aims to: Raise and maintain awareness about epilepsy. Educate people about the facts about epilepsy and improve their understanding of the condition. Bring about permanent change for the social and medical benefit of people with epilepsy. Provide advice and information about epilepsy. Promote all types of research into epilepsy and undertake social and medical research into epilepsy. Ensure that epilepsy is fully understood and the needs of people with epilepsy are supported.
Seizure, 1997
People with epilepsy plus learning disabilities pose a challenge in terms of clinical management ... more 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.
Neurology, 2011
Objective: Adverse effects (AEs) are a major concern when starting antiepileptic drug (AED) treat... more Objective: Adverse effects (AEs) are a major concern when starting antiepileptic drug (AED) treatment. This study quantified the extent to which AE reporting in people with new-onset seizures started on AEDs is attributable to the medication per se, and investigated variables contributing to AE reporting. Methods: We pooled data from 2 large prospective studies, the Multicenter Study of Early Epilepsy and Single Seizures and the Northern Manhattan Study of incident unprovoked seizures, and compared adverse event profile (AEP) total and factor scores between adult cases prescribed AEDs for new-onset seizures and untreated controls, adjusting for several demographic and clinical variables. Differences in AEP scores were also tested across different AED monotherapies and controls, and between cases and controls grouped by number of seizures. Results: A total of 212 cases and 206 controls were identified. Most cases (94.2%) were taking low AED doses. AEP scores did not differ significantly between the 2 groups. Depression, female gender, symptomatic etiology, younger seizure onset age, Ն2 seizures, and history of febrile seizures were associated with higher AEP scores. There were no significant differences in AEP scores across different monotherapies and controls. AEP scores increased in both cases and controls with increasing number of seizures, the increment being more pronounced in cases. Conclusions: When AED treatment is started at low doses following new-onset seizures, AE reporting does not differ from untreated individuals. Targeting specific factors affecting AE reporting could lead to improved tolerability of epilepsy treatment. Neurology ® 2011;76:273-279 GLOSSARY AE ϭ adverse effect; AED ϭ antiepileptic drug; AEP ϭ Adverse Event Profile; CBZ ϭ carbamazepine; DIS ϭ Diagnostic Interview Schedule; DISC ϭ Diagnostic Interview Schedule for Children; DSM-IV ϭ Diagnostic and Statistical Manual of Mental Disorders, 4th edition; HADS ϭ Hospital Anxiety and Depression Scale; LEV ϭ levetiracetam; LTG ϭ lamotrigine; MESS ϭ Multicenter Study of Early Epilepsy and Single Seizures; NMS ϭ Northern Manhattan Study; PHT ϭ phenytoin; VPA ϭ valproic acid. For individuals with newly diagnosed epilepsy starting antiepileptic drug (AED) treatment, adverse effects (AEs) are the most common concern. Cognitive impairment, coordination disturbances, sedation problems, and mood dysfunction affect up to 60% of people taking AEDs, 1,2 adversely impacting everyday functioning. 3 Idiosyncratic AEs are more frequent with AEDs than with other agents, 4 and lead to substantial morbidity and mortality. 5 Counseling about tolerability and safety of AEDs relies on information from randomized trials and observational studies. Most randomized trials, however, are designed to address regulatory requirements 6 and their results are not easily applicable to routine practice. 7,8 In particular, these trials use strict inclusion/exclusion criteria, apply minimally
The Lancet, 2007
Background-Carbamazepine is widely accepted as a drug of first choice for patients with partial o... more Background-Carbamazepine is widely accepted as a drug of first choice for patients with partial onset seizures. Several newer drugs possess efficacy against these seizure types but previous randomised controlled trials have failed to inform a choice between these drugs. We aimed to assess efficacy with regards to longer-term outcomes, quality of life, and health economic outcomes. Methods-SANAD was an unblinded randomised controlled trial in hospital-based outpatient clinics in the UK. Arm A recruited 1721 patients for whom carbamazepine was deemed to be standard treatment, and they were randomly assigned to receive carbamazepine, gabapentin, lamotrigine, oxcarbazepine, or topiramate. Primary outcomes were time to treatment failure, and time to 12-months remission, and assessment was by both intention to treat and per protocol. This study is registered as an International Standard Randomised Controlled Trial, number ISRCTN38354748. Findings-For time to treatment failure, lamotrigine was significantly better than carbamazepine (hazard ratio [HR] 0•78 [95% CI 0•63-0•97]), gabapentin (0•65 [0•52-0•80]), and topiramate (0•64 [0•52-0•79]), and had a non-significant advantage compared with oxcarbazepine (1•15 [0•86-1•54]). For time to 12-month remission carbamazepine was significantly better than gabapentin (0•75 [0•63-0•90]), and estimates suggest a non-significant advantage for carbamazepine against lamotrigine (0•91 [0•77-1•09]), topiramate (0•86 [0•72-1•03]), and oxcarbazepine (0•92 [0•73-Marson et al.
Health Expectations, 2013
BackgroundMuch has been written about public involvement (PI) in health and social care research,... more BackgroundMuch has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.ObjectiveThe narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.MethodsWe undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks.ResultsThree overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; acco...
Epilepsy & Behavior, 2012
Epilepsy is a common chronic neurological disease. One of its characteristics is that it can brin... more Epilepsy is a common chronic neurological disease. One of its characteristics is that it can bring severe stigma for patients. At the same time as controlling the epileptic seizures, taking appropriate measures to reduce the stigma of epilepsy is an important aspect of any comprehensive intervention strategy. We examined the views of 106 participants of different target groups, including patients with epilepsy (PWE), their family members, neighbors, teachers, employers, community administrators, doctors and nurses, using one to one in-depth interviews and group discussions. The discussions covered the following aspects related to epilepsy: the participants' understanding of epilepsy, the patients' own perception of epilepsy, the attitudes of surrounding people, the social and cultural environment, the social support available to them, and government regulations and policies. We found that the stigma of epilepsy is a very negative selffeeling from the patients' perspective. Many complex and diverse factors determine its formation and severity. The stigma of epilepsy, in a particular social and cultural context, can be demonstrated in the internalized, interpersonal and institutional levels. Hence, we suggest that effective measures to alleviate stigma should be based on ways of eliminating factors which cause institutional stigma. Additionally, depending on the specific circumstances of PWE, a personalized approach to eliminate factors which cause internalized and interpersonal stigma needs to be adopted. Only by addressing impacting factors at each of these three levels, can the stigma of PWE in China be alleviated or even eliminated.
Epilepsy & Behavior, 2003
Objective. The goal of our work was to assess compliance and patient satisfaction with switching ... more 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.
Epilepsy & Behavior, 2011
To identify the possible sources of stigma of epilepsy in key informant groups, "miniethnographic... more To identify the possible sources of stigma of epilepsy in key informant groups, "miniethnographic" studies were conducted in rural and urban locations in China. Data from 45 semistructured interviews and 8 focus group discussions (6 persons each) were analysed to investigate the world experienced by people with epilepsy. Underpinned by a social constructionist approach to data analysis, emerging themes were identified with the use of computer-assisted data analysis (NVivo 8). A hierarchical model was then constructed, to include: Practical Level issues: attitudes to risk, attitudes towards costs of epilepsy; and Cultural Level issues: the contrast between rurality and tradition and urbanization and modernity in the Chinese context. The analysis enriches current research on factors and sources of stigma of epilepsy and highlights issues for future practice.
Epilepsy & Behavior, 2009
Reis. We wish to thank the participants who dedicated their time and energy to take part in this ... more Reis. We wish to thank the participants who dedicated their time and energy to take part in this study. We also thank the US National Institutes of Health for its financial support (Grant Number R21 NS048839-02). The NIH had no role in writing this article or in the decision to submit it for publication. The CREST Project operates under the auspices of the Global Campaign Against Epilepsy.
Epilepsy & Behavior, 2009
We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy and di... more We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy and disclosure in Vietnam by using in depth interviews with people with epilepsy (PWE) and their family members. We found that although participants prefer Western treatment methods more than traditional ones, they experience problems in accessing different kinds of anti-epileptic drugs (AEDs) and higher-level treatment facilities and with respect to treatment expenses. The impact of epilepsy can be observed in a wide range of daily living activities which include working, education, marriage prospects and family formation. Although both families and society at large do not hold negative attitudes toward epilepsy, most PWE reported a sense of burden to others. Both PWE and family members generally prefer disclosing epilepsy rather than concealing it from others. Our findings strongly suggest a need for different types of AEDs, and supporting information for PWE, family members and general public about epilepsy.
Epilepsy & Behavior, 2007
Few suitable instruments exist for use with people, especially children, with both epilepsy and l... more 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 paper reports on the final psychometric testing phase of ELDQOL. ELDQOL consists of 70 items covering seizure severity, seizure-related injuries, AED side-effects, behaviour, mood, physical, cognitive and social functioning, parental concern, communication, overall QOL 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 and test-retest reliability, and validity. The final version of ELDQOL has very good evidence of reliability and validity, making it a promising instrument for assessing QOL in children/young adults with epilepsy and learning disability.