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Objectives: People with epilepsy (PWE) have a higher mortality rate than the general population. Epilepsy-related deaths have increased despite all-cause mortality decreasing in the general population pre-COVID-19. We hypothesised that clinical and lifestyle factors may identify people more at risk., Design: We used a retrospective cohort study to explore cause of death and a nested case-control study to identify risk factors., Setting: We explored factors associated with mortality using primary care population data from 1 April 2004 to 31 March 2014. Data were obtained from the Clinical Practice Research Datalink which compiles anonymised patient data from primary care in the UK. Cause of death data was supplemented from the Office of National Statistics when available., Participants: The analysis included 70 431 PWE, with 11 241 registered deaths., Results: The number of deaths within the database increased by 69% between the first and last year of the study. Epilepsy was considered as a contributing cause in approximately 45% of deaths of PWE under 35. Factors associated with increased risk of death included attendance at emergency departments and/or emergency admissions (OR 3.48, 95% CI 3.19 to 3.80), antiepileptic drug (AED) polytherapy (2 AEDs: OR 1.60, 95% CI 1.51 to 1.71; 3 AEDs: OR 2.06, 95% CI 1.86 to 2.29; 4+AEDs: OR 2.62, 95% CI 2.23 to 3.08), status epilepticus (OR 2.78, 95% CI 1.64 to 4.71), depression (OR 1.67, 95% CI 1.57 to 1.76) and injuries (OR 1.54, 95% CI 1.43 to 1.67). No seizures in the prior year (OR 0.52, 95% CI 0.41 to 0.65)., Conclusion: Our results add to existing evidence that deaths in epilepsy are increasing. Future studies could focus on identifying PWE at high risk and addressing them with clinical interventions or better self-management. Identifying specific risk factors for younger people should be a priority as epilepsy may be a factor in close to half of deaths of PWE under 35 years of age., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

There are two peaks of diagnosis of epilepsy: in childhood and in people over 65. Older people may have complex needs like co-morbidity, polypharmacy, frailty, and social isolation. This scoping review focusses on the care of older people with epilepsy beyond diagnosis and medical treatment. We sought to identify areas within the UK health service needing development either in clinical practice or through further research. The search returned 4864 papers with 33 papers included in the review. The papers were grouped into psychosocial, self-management and services themes. Only one randomised controlled trial was found. Research was mainly based on cohort and case-control studies. Older people require more information to self-manage epilepsy and more psychological support to help with symptoms of anxiety and depression. People reported experiencing stigma and a reluctance to disclose their condition. This may increase the risk of isolation and difficulties in managing epilepsy. Studies reported that older people are referred less to neurologists, suggesting there may be a gap in care provision compared to younger people. Generalist health professionals may be better placed to provide holistic care, but they may need additional training to alleviate uncertainties in managing epilepsy. Care plans could help provide information, particularly for co-morbidity, but few had one. Our findings highlight psychological and self-management needs for managing epilepsy in older people. Health service staff may require upskilling to shift epilepsy management from neurologists to generalists. More research is needed regarding psychological and self-management interventions, particularly in the form of randomised controlled trials., (Copyright © 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Purpose: Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent Treatment Centre and telephone-based support from an epilepsy nurse specialist., Methods: We conducted a community-based interview study in South East England, informed by a qualitative framework approach. 25 adults with epilepsy and 5 of their carers took part., Results: Participants' choice to attend ED generally corresponded with guidelines, including continuing seizures and injury. Nevertheless, over half reported unwanted or unnecessary ED attendance, mainly due to lack of access to individual patient history, a carer, or seizures occurring in a public place. Participants used proactive strategies to communicate their care needs to others, including 24 -h alarm devices and care plans. Some suggested preventative strategies including referral after ED. Participants highlighted the importance of ambulance staff in providing fast and efficient care that gives reassurance., Conclusion: Improving communication and access to preventative, proactive services may facilitate better outcomes within existing care pathways. PWE felt ED alternatives were helpful in some circumstances, but Urgent Treatment Centres or epilepsy nurse specialists were not viewed as an ED replacement., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: To determine the feasibility and optimal design of a randomised controlled trial (RCT) of Seizure First Aid Training For Epilepsy (SAFE)., Design: Pilot RCT with embedded microcosting., Setting: Three English hospital emergency departments (EDs)., Participants: Patients aged ≥16 with established epilepsy reporting ≥2 ED visits in the prior 12 months and their significant others (SOs)., Interventions: Patients (and their SOs) were randomly allocated (1:1) to SAFE plus treatment-as-usual (TAU) or TAU alone. SAFE is a 4-hour group course., Main Outcome Measures: Two criteria evaluated a definitive RCT's feasibility: (1) ≥20% of eligible patients needed to be consented into the pilot trial; (2) routine data on use of ED over the 12 months postrandomisation needed securing for ≥75%. Other measures included eligibility, ease of obtaining routine data, availability of self-report ED data and comparability, SAFE's effect and intervention cost., Results: Of ED attendees with a suspected seizure, 424 (10.6%) patients were eligible; 53 (12.5%) patients and 38 SOs consented. Fifty-one patients (and 37 SOs) were randomised. Routine data on ED use at 12 months were secured for 94.1% patients. Self-report ED data were available for 66.7% patients. Patients reported more visits compared with routine data. Most (76.9%) patients randomised to SAFE received it and no related serious adverse events occurred. ED use at 12 months was lower in the SAFE+TAU arm compared with TAU alone, but not significantly (rate ratio=0.62, 95% CI 0.33 to 1.17). A definitive trial would need ~674 patient participants and ~39 recruitment sites. Obtaining routine data was challenging, taking ~8.5 months., Conclusions: In satisfying only one predetermined 'stop/go' criterion, a definitive RCT is not feasible. The low consent rate in the pilot trial raises concerns about a definitive trial's finding's external validity and means it would be expensive to conduct. Research is required into how to optimise recruitment from the target population., Trial Registration Number: ISRCTN13871327., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Purpose: Epilepsy is associated with costly unplanned health service use. The UK's National Audits of Seizure Management in Hospital found use was often clinically unnecessary, avoidable and typically led to little benefit for epilepsy management. We systematically identified how services have responded to reduce such use., Methods: We invited England's ambulance services, neuroscience and neurology centres and a random sample of Emergency Departments (EDs) to complete a survey. It asked what innovations they (or services they worked with) had made in the past 5 years or were making, the priority afforded to them, user involvement, what comprised usual practice, and barriers to change., Results: 72/87 of invited (82.8 %) services responded. EDs ascribed less priority to reducing emergency hospital use for epilepsy and convulsions, than other service types. Overall, 60 % of services reported a change(s) and/or were planning one. Neurology/neuroscience sites (93.8 %) were most likely to report change; EDs (15.4 %) least likely. Eleven types of change were identified; 5 sought to promote proactive epilepsy care and avert the need for emergency care; 3 focused on the care received from emergency services; and 3 focused on follow-up care ED attendees received. Most were for those with established, rather than new epilepsy and targeted known limitations to current care provision., Conclusion: Reducing emergency hospital use by PWE is a high priority for most health services in England and a number of new services have been developed. However, they have not been consistently implemented and innovation is lacking in some areas of care., Competing Interests: Declaration of Competing Interest We declare there are no conflict of interests., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Emergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An 'Alternative Care Pathway' (ACP) for epilepsy, which diverts people with epilepsy (PWE) away from ED when '999' is called and leads to care elsewhere, might generate savings and facilitate improved ambulatory care. It is unknown though what features it should incorporate to make it acceptable to persons from this particularly vulnerable target population. It also needs to be National Health Service (NHS) feasible. This project seeks to identify the optimal ACP configuration., Methods and Analysis: Mixed-methods project comprising three-linked stages. In Stage 1, NHS bodies will be surveyed on ACPs they are considering and semi-structured interviews with PWE and their carers will explore attributes of care important to them and their concerns and expectations regarding ACPs. In Stage 2, Discrete Choice Experiments (DCE) will be completed with PWE and carers to identify the relative importance placed on different care attributes under common seizure scenarios and the trade-offs people are willing to make. The uptake of different ACP configurations will be estimated. In Stage 3, two Knowledge Exchange workshops using a nominal group technique will be run. NHS managers, health professionals, commissioners and patient and carer representatives will discuss DCE results and form a consensus on which ACP configuration best meets users' needs and is NHS feasible., Ethics and Dissemination: Ethical approval: NRES Committee (19/WM/0012) and King's College London ethics Committee (LRS-18/19-10353). Primary output will be identification of optimal ACP configuration which should be prioritised for implementation and evaluation. A pro-active dissemination strategy will make those considering developing or supporting an epilepsy ACP aware of the project and opportunities to take part in it. It will also ensure they are informed of its findings., Project Registration Number: Researchregistry4723., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Objective: We aimed to describe patients' views of a new referral pathway of general practitioner (GP) direct access to MRI, versus imaging after referral to a specialist., Design: This qualitative study involved 20 semistructured interviews. Twenty patients (10 from each pathway) were purposively recruited and interviewed to describe their attitudes., Setting: A neurology headache clinic and neuroradiology services from the boroughs of Southwark and Lambeth in South London, UK., Participants: Twenty patients were involved in this study., Results: Over half of the participants felt relieved once they received their scan results, while some remained uncertain about the underlying cause of their symptoms. Some participants described a long wait to see a specialist. Others described a long wait time to receive scan results, especially from their GP. Spontaneous reduction in headache symptoms occurred for some participants and for others, normal imaging results allowed them to focus more on symptom management., Conclusion: Relief was reported especially when scan results had been explained clearly and without too much delay. Those with continuing pain focused on how to get relief from symptoms. Patient experience might be improved with clearer information from GPs about how patients can access results, standard reporting procedures and closer liaison between neuroradiology and GPs., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: To help with a long-term but invisible medical condition such as migraine, many people seek information and support on social media. The effect of using social media for people with migraine is not fully understood and remains to be investigated., Objective: The aim of this study was to describe how people with migraine use social media and how social media use affects their identity and sense of self., Methods: A total of 20 participants who experienced migraine were recruited via migraine-specific charities. Semistructured interviews were conducted with questions based on a topic guide. Interviews were transcribed verbatim, and transcripts were analyzed using thematic analysis., Results: People with migraine are using social media to obtain information to better understand their condition and treatment options. Social media offers instant access to continuous information and social support. This exchange of social support and information was viewed as mutually beneficial. Participants viewed social media as an outlet to vent frustrations and validate the migraine experience. Several participants pointed out that the invisible and episodic nature of migraine can lead to societal misunderstanding of the impact and or severity of their condition. Some participants masked their online migraine-related behavior using different sites or closed online groups to control who saw their migraine-related content. Participating in closed social media groups sometimes changed Web-based behavior in other areas of the platform. This illustrates the complex relationship between migraine, social media, and identity., Conclusions: How migraine is part of an individual's identity and how this is represented online can vary. Social media can provide people who experience migraine with instant and continuous access to support and information, from a group of empathic others with similar lived experiences. Social media is used to validate the illness experience, as well as provide reassurance and help reduce feelings of isolation., (©Carly Pearson, Rosanna Swindale, Peter Keighley, Alison Ruth McKinlay, Leone Ridsdale. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 19.06.2019.)

Purpose: To measure fidelity with which a group seizure first aid training intervention was delivered within a pilot randomized controlled trial underway in the UK for adults with epilepsy who visit emergency departments (ED) and informal carers. Estimates of its effects, including on ED use, will be produced by the trial. Whilst hardly ever reported for trials of epilepsy interventions-only one publication on this topic exists-this study provides the information on treatment fidelity necessary to allow the trial's estimates to be accurately interpreted. This rare worked example of how fidelity can be assessed could also provide guidance sought by neurology trialists on how to assess fidelity., Methods: 53 patients who had visited ED on ≥2 occasions in prior year were recruited for the trial; 26 were randomized to the intervention. 7 intervention courses were delivered for them by one facilitator. Using audio recordings, treatment "adherence" and "competence" were assessed. Adherence was assessed by a checklist of the items comprising the intervention. Using computer software, competence was measured by calculating facilitator speech during the intervention (didacticism). Interrater reliability was evaluated by two independent raters assessing each course using the measures and their ratings being compared., Results: The fidelity measures were found to be reliable. For the adherence instrument, raters agreed 96% of the time, PABAK-OS kappa 0.91. For didacticism, raters' scores had an intraclass coefficient of 0.96. In terms of treatment fidelity, not only were courses found to have been delivered with excellent adherence (88% of its items were fully delivered) but also as intended they were highly interactive, with the facilitator speaking for, on average, 55% of course time., Conclusions: The fidelity measures used were reliable and showed that the intervention was delivered as attended. Therefore, any estimates of intervention effect will not be influenced by poor implementation fidelity.

Background: Web-based media, particularly social networking sites (SNSs), are a source of support for people with long-term conditions, like epilepsy. Living with epilepsy can reduce opportunities for accessing information and social support owing to transportation difficulties and stigma leading to self-isolation. However, some people with epilepsy (PWE) overcome these barriers using SNSs and other Web-based media. At present, little is known about Web-based identity and self-presentation of PWE; this study aims to address this gap., Objective: This study aims to describe how the use of digital technologies, such as SNSs, impacts sense of identity in PWE., Methods: We used qualitative research methods to examine Web-based media use and self-presentation in a group of 14 PWE (age range: 33-73 years; 7 men and 7 women). The median diagnosis duration was 25 years. Semistructured interviews ranged from 40 to 120 minutes, held at participants' homes or in a public place of their choice, in the United Kingdom. QSR Nvivo 11 software was used to perform an inductive thematic analysis., Results: In this study, 9 participants used Web-based media to "silently" learn from other PWE by reading user posts on SNSs and epilepsy-related forums. When asked about self-presentation, 7 participants described feeling cautious about disclosing their epilepsy to others online. Six participants presented themselves in the same manner irrespective of the situation and described their identity as being presented in the same way both online and offline., Conclusions: PWE can deploy SNSs and Web-based media to manage aspects of their condition by learning from others and obtaining social support that may otherwise be difficult to access. Some PWE share openly, whereas others silently observe, without posting. Both benefit from the shared experiences of others. Privacy concerns and stigma can act as a barrier to sharing using Web-based media and SNSs. For some, Web-based media offers a chance to experiment with identity and change self-presentation, leading to gradually "coming out" and feeling more comfortable discussing epilepsy with others., (©Alison Ruth McKinlay, Leone Lorna Ridsdale. Originally published in the Interactive Journal of Medical Research (http://www.i-jmr.org/), 21.12.2018.)

Objective: To investigate the responsiveness of and correlation between the EQ-5D-5L and the QOLIE-31P in patients with epilepsy, and develop a mapping function to predict EQ-5D-5L values based on the QOLIE-31P for use in economic evaluations., Methods: The dataset was derived from two clinical trials, the ZMILE study in the Netherlands and the SMILE study in the UK. In both studies, patients' quality of life using the EQ-5D-5L and QOLIE-31P was measured at baseline and 12 months follow-up. Spearman's correlations, effect sizes (EF) and standardized response means (SRM) were calculated for both the EQ-5D-5L and QOLIE-31P domains and sub scores. Mapping functions were derived using ordinary least square (OLS) and censored least absolute deviations models., Results: A total of 509 patients were included in this study. Low to moderately strong significant correlations were found between both instruments. The EQ-5D-5L showed high ceiling effects and small EFs and SRMs, whereas the QOLIE-31P did not show ceiling effects and also showed small to moderate EFs and SRMs. Results of the different mapping functions indicate that the highest adjusted R 2 we were able to regress was 0.265 using an OLS model with squared terms, leading to a mean absolute error of 0.103., Conclusions: Results presented in this study emphasize the shortcomings of the EQ-5D-5L in epilepsy and the importance of the development of condition-specific preference-based instruments which can be used within the QALY framework. In addition, the usefulness of the constructed mapping function in economic evaluations is questionable.

Objective: Epilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self-management. Our objective was to evaluate a group self-management education courses for people with epilepsy and drug-resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial., Methods: We recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31-P (QOLIE-31-P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self-mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention-to-treat principle using mixed-effects regression models., Results: We enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12-month follow-up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12-month follow-up, there were no statistically significant differences between trial arms in QOLIE-31-P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures., Significance: This is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow-up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt-stigma and psychological distress in this group of people with drug-resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self-management-education courses., (© 2018 The Authors. Epilepsia published by Wiley Periodicals, Inc. on behalf of International League Against Epilepsy.)

Background: Epilepsy is a common neurological condition resulting in recurrent seizures. Research evidence in long-term conditions suggests that patients benefit from self-management education and that this may improve quality of life (QoL). Epilepsy self-management education has yet to be tested in a UK setting., Objectives: To determine the effectiveness and cost-effectiveness of Self-Management education for people with poorly controlled epILEpsy [SMILE (UK)]., Design: A parallel pragmatic randomised controlled trial., Setting: Participants were recruited from eight hospitals in London and south-east England., Participants: Adults aged ≥ 16 years with epilepsy and two or more epileptic seizures in the past year, who were currently being prescribed antiepileptic drugs., Intervention: A 2-day group self-management course alongside treatment as usual (TAU). The control group received TAU., Main Outcome Measures: The primary outcome is QoL in people with epilepsy at 12-month follow-up using the Quality Of Life In Epilepsy 31-P (QOLIE-31-P) scale. Other outcomes were seizure control, impact of epilepsy, medication adverse effects, psychological distress, perceived stigma, self-mastery and medication adherence. Cost-effectiveness analyses and a process evaluation were undertaken., Randomisation: A 1 : 1 ratio between trial arms using fixed block sizes of two., Blinding: Participants were not blinded to their group allocation because of the nature of the study. Researchers involved in data collection and analysis remained blinded throughout., Results: The trial completed successfully. A total of 404 participants were enrolled in the study [SMILE (UK), n  = 205; TAU, n  = 199] with 331 completing the final follow-up at 12 months [SMILE (UK), n  = 163; TAU, n  = 168]. In the intervention group, 61.5% completed all sessions of the course. No adverse events were found to be related to the intervention. At baseline, participants had a mean age of 41.7 years [standard deviation (SD) 14.1 years], and had epilepsy for a median of 18 years. The mean QOLIE-31-P score for the whole group at baseline was 66.0 out of 100.0 (SD 14.2). Clinically relevant levels of anxiety symptoms were reported in 53.6% of the group and depression symptoms in 28.0%. The results following an intention-to-treat analysis showed no change in any measures at the 12-month follow-up [QOLIE-31-P: SMILE (UK) mean: 67.4, SD 13.5; TAU mean: 69.5, SD 14.8]. The cost-effectiveness study showed that SMILE (UK) was possibly cost-effective but was also associated with lower QoL. The process evaluation with 20 participants revealed that a group course increased confidence by sharing with others and improved self-management behaviours., Conclusions: For people with epilepsy and persistent seizures, a 2-day self-management education course is cost-saving, but does not improve QoL after 12-months or reduce anxiety or depression symptoms. A psychological intervention may help with anxiety and depression. Interviewed participants reported attending a group course increased their confidence and helped them improve their self-management., Future Work: More research is needed on self-management courses, with psychological components and integration with routine monitoring., Trial Registration: Current Controlled Trials ISRCTN57937389., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 22, No. 21. See the NIHR Journals Library website for further project information., Competing Interests: Leone Ridsdale secured funding from the Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Laura H Goldstein reports that her independent research also receives support from the National Institute for Health Research (NIHR) Maudsley Biomedical Research Unit at the South London and Maudsley NHS Foundation Trust and King’s College London. She receives royalties from Goldstein LH and McNeil JE (editors) Clinical Neuropsychology. A Practical Guide to Assessment and Management for Clinicians. 2nd edn. Chichester: Wiley-Blackwell, 2013; and from Cull C and Goldstein LH (editors) The Clinical Psychologist’s Handbook of Epilepsy: Assessment and Management. Abingdon-on-Thames: Routledge; 1997. Sabine Landau reports grants from NIHR Maudsley Biomedical Research Unit at the South London and Maudsley NHS Foundation Trust and King’s College London during the conduct of the study and received a grant from NIHR Health Technology Assessment. Stephanie JC Taylor is on the Health Technology Assessment Clinical Trials Board and reports grants from the NIHR Collaboration for Leadership in Applied Health Research and Care North Thames at Barts Health NHS Trust. The authors received a contribution from Sanofi UK to enable printing of the patient workbooks.

Objective: To conduct a cost of illness study to estimate the economic impact of referring people with headache to specialists., Background: Headache is one of the commonest health conditions affecting individuals in society., Methods: Participants formed a convenience sample and were recruited from specialist headache clinics across London. Self-report data on service use over a 4-month period and lost employment were provided. These data were used to estimate economic costs. Predictors of cost were identified using multivariate analyses., Results: The mean (standard deviation) service costs for the 4-month period was £857 (£845). The mean total cost (including lost employment) was £6588 (£11,982) with costs of informal care accounting for 74% of this figure. Total costs were on average £1079 higher for a unit increase on the headache impact test scale (P < .001; 95% CI £330 to £1784)., Conclusions: Costs of headache are high, and increase with severity of symptoms. The annual cost to the country for those referred to specialists is estimated at £835 million., (© 2017 American Headache Society.)

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants' mean score was 66, with a wide range (25-99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy.

Migraine causes major health impairment and disability. Psychological interventions offer an addition to pharmacotherapy but they are not currently recommended by the National Institute of Clinical Excellence (NICE) or available in the National Health Service. We aimed to systematically review evidence on the efficacy of psychological interventions for migraine in adults. A search was done of MEDLINE, psychINFO, http://www.opengrey.eu , the meta-register of controlled trials and bibliographies. Twenty-four papers were included and rated independently by two people using the Yates scale, which has 35 points. Cochrane recommendations are that high quality reports score above the mid-point (18 points). Methods used in 17/24 papers were rated 'high quality'. However, frequently descriptions of key areas such as randomisation methods were omitted. Eighteen studies measured effects of psychological interventions on headache-related outcomes, fifteen reporting significant improvements, ranging 20-67 %. Interventions also produced improvements in psychological outcomes. Few trials measured or reported improvement in disability or quality of life. We conclude that evidence supports the efficacy of psychological interventions in migraine. Over half of the studies were from the USA, which did not provide universal health care at the time of the study, so it is difficult to generalise results to typical populations in receipt of publically funded health services. We agree with the NICE recommendation that high quality pragmatic randomised controlled trials are needed in the UK., Competing Interests: Compliance with ethical standards Conflicts of interest The authors declare no conflicts of interest.

Background: Migraine headache has a high prevalence and a severe impact on personal, social and work life, forming a significant burden on patients, service providers and society. There is some evidence of the effectiveness of behavioural interventions to supplement drug therapy but a recognised need to identify an effective minimal contact approach to enhance access and provide a model for use in publicly funded health systems. This study uses in-depth interviews to examine patients' experience and responses to a behavioural intervention with relaxation and CBT components delivered in three individual therapist sessions with follow-up., Methods: Qualitative study of 20 adults aged 18-75 years in London, UK, with clinically diagnosed migraine and at least four headache days per month. Semi-structured and tape recorded interviews were held post intervention based on a topic guide. Transcripts were coded and charted for all participants and analysed thematically., Results: The majority of participants cited the impacts of migraine and a desire for additional non-drug treatment as their main reasons for taking part and almost all completed the course. They valued contact with the therapist and almost all reported benefiting from the therapy. Post intervention they used those techniques they found most beneficial and implemented them flexibly in their daily life to reduce stress and risks of migraine or to respond to migraine. Relaxation training (deep breathing) was easily adopted and often used post intervention. The CBT components were mainly viewed positively but regarded as more challenging to learn and implement., Conclusions: Patients' selectively identified and employed the techniques learned as 'tools' to assist in preventing and managing their migraines, with reported benefits supporting the development of minimal contact behavioural therapy to increase accessibility for adults with migraine headache and the conduct of a definitive trial.

Background: The relationship between migrainous aura and patent foramen ovale (PFO) remains uncertain, Methods: We performed 'bubble' contrast transthoracic echocardiography on 80 migraineurs with 4-15 headache days per calendar month, mean age 45 (75% female) with mean 9.4 headache days. A large PFO was defined by passage of an uncountable bolus of bubbles or complete opacification of the left-heart in ≤3 cycles, while a moderate PFO was defined by passage of ≥20 bubbles but not sufficient to form a bolus or opacify the whole of the left heart., Results: There was a moderate or large PFO in 28 (35%; 95% CI 24-46%). There were atrial septal aneurysms in 11 (15%) and the relationship with PFO was moderately strong (spearman rank correlation 0.493, CI 0.308 to 0.643; p < 0.0001). Seven (9%) had a valve abnormality and one had a closure device for an atrial septal defect. Aura were reported in 31 (39%) and in these the PFO was large in 9 (29%) compared with 8 (16%; p = 0.143) without aura. There was no relationship between the size of the PFO and the number of headache days (difference between no PFO and large PFO = -0.6 days; 95% CI -2.6 to +1.4; p-value for any difference between groups = 0.316)., Conclusions: The prevalence of moderate or large patent foramen ovale was 35% and was not associated with the presence of aura or the frequency of the headache., (© 2013.)

Some people with chronic epilepsy (PWE) make clinically unnecessary, and potentially avoidable, visits to hospital emergency departments. Whilst expensive, it is not known how to reduce them. We recently conducted the first trial of an epilepsy-nurse specialist intervention which aimed to optimise self-management skills in PWE attending emergency departments and advise them on appropriate emergency services use. Based on in-depth semi-structured interviews, we here report the perceived support needs of patients who have attended a emergency department for epilepsy and the benefits of the intervention which they identified. Nested qualitative study. After receiving the intervention, 20 participants were invited to interview. They described their experience of the intervention, to what extent they valued it and its benefits and limitations. Interviews were audio-recorded, transcribed and thematically analysed. Most valued the additional support. Those who previously used emergency departments most perceived greatest benefit. Participants felt it redressed limitations to usual care, including providing information about living with epilepsy, and an opportunity to discuss feelings about epilepsy. Perceived benefits included improvements in emotional well-being, confidence dealing with seizures and medication adherence. The intervention was acceptable to patients. People with epilepsy who had attended a emergency department on more than one occasion perceived most benefit. This suggests they want additional care. Some perceived benefits in domains possibly causally related to emergency department use. This suggests the intervention, with optimisation, may have the components to reduce emergency department visits. Our results provide insights into how to support PWE who attend emergency departments and how needs differ amongst this group.

Background: In the UK, epilepsy is the neurological condition with the highest rate of accident and emergency department re-attendance, with most arriving by ambulance. Ambulance clinicians triage patients and assess their need for attendance. This study examined the decision-making process of ambulance clinicians in these situations., Methods: In-depth interviews with 15 ambulance clinicians working in South London., Results: Interviewees identified that epileptic seizures that self-resolve present a triage challenge. They reported insufficient training and guidance available for these situations and substantial reliance on experience to direct their practice. Fears of litigation in the event of complications, pressures of public expectation and limited on-scene access to relevant patient information or appropriate alternative care pathways were reported to be significant factors influencing decisions for care for epilepsy seizures., Discussion: Ambulance clinicians reported negotiating a balance between patient safety and patient choice, when deciding whether to transport a patient with epilepsy to hospital or not. Clinician fears and the pressures and limitations of practice may result in hospital conveyance being used as a safety precaution in some instances., Conclusions: Decisions regarding conveyance of patients with epilepsy in this study were substantially guided by ambulance clinician experience rather than by robust training and guidelines. This study supports the need for improved guidance that addresses this common area of practice and the development of alternative care pathways that may be used by ambulance clinicians for patients with epilepsy.

Purpose: Liver enzyme inducing antiepileptic drugs (LEI AEDs) have adverse effects on bone metabolism but it is unclear whether this translates into increased fracture risk. This population based cohort study aimed to evaluate whether treatment with LEI AEDs is associated with increased risk of fracture in people with active epilepsy., Methods: The cohort included patients diagnosed with epilepsy and prescribed AEDs while registered at a GPRD general practice during 1993-2008. The hazard ratio with current use of LEI AEDs for fracture at any site and hip fracture was estimated using Cox proportional hazards models., Results: There were 7356 fractures (788 hip fractures) in 63259 participants. In women, the adjusted hazard ratio with use of LEI AEDs was 1.22 for fracture (95% CI 1.12-1.34; p<0.001) and 1.49 for hip fracture (1.15-1.94; p=0.002). In men, the hazard ratio for fracture was 1.09 (0.98-1.20; p=0.123) and for hip fracture 1.53 (1.10-2.12; p=0.011). For every 10000 women treated with LEI AEDs for one year, there could be 48 additional fractures, including 10 additional hip fractures. For every 10000 men treated with LEI AEDs for one year, there could be 4 additional hip fractures., Conclusions: LEI AEDs may increase the risk of fracture in people with epilepsy. In patients at high risk of osteoporotic fracture alternative AED therapy may be appropriate. Further information is urgently needed on the safety of valproate and newer AEDs and on strategies to maintain bone health in people who need to be treated with LEI., (Copyright © 2012 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Purpose: One fifth of people with established epilepsy attend hospital emergency departments (EDs) and one half are admitted each year. These ED visits are not necessarily required, and unplanned hospitalizations are costly. Reducing avoidable ED visits and admissions is a target in most health services. The development of interventions is, however, challenging. Policymakers lack information about users' characteristics, factors associated with ED use, as well as quality of care. This study provides this information., Methods: We prospectively recruited patients attending three London EDs for seizures. They completed questionnaires on service use and psychosocial state., Key Findings: Eighty-five patients were recruited. The mean age was 41; 53% were male. The average number of ED attendances in the prior year (mean 3.2; median 2) exceeded that of other ED users and those with most chronic conditions. ED use was not homogenous, with some patients attending frequently. Compared to the wider epilepsy population, ED attendees experienced more seizures, anxiety, had lower knowledge of epilepsy and its management and greater perceived epilepsy-related stigma. In the previous 12 months, most patients' epilepsy outpatient care was consistent with standard criteria for quality. In descending order, lower knowledge, higher perceived stigma, poorer self-medication management, and seizure frequency were associated with more emergency visits., Significance: People with epilepsy presenting to EDs reattend frequently. Interventions aiming at reduced ED use by this population should address lower knowledge, stigma, suboptimal self-management, and frequent seizures reported by patients., (Wiley Periodicals, Inc. © 2012 International League Against Epilepsy.)

Background: Fatigue is common and has been shown to result in high economic costs to society. The aim of this study is to compare the cost-effectiveness of two active therapies, graded-exercise (GET) and counselling (COUN) with usual care plus a self-help booklet (BUC) for people presenting with chronic fatigue., Methods: A randomised controlled trial was conducted with participants consulting for fatigue of over three months' duration recruited from 31 general practices in South East England and allocated to one of three arms. Outcomes and use of services were assessed at 6-month follow-up. The main outcome measure used in the economic evaluation was clinically significant improvements in fatigue, measured using the Chalder fatigue scale. Cost-effectiveness was assessed using the net-benefit approach and cost-effectiveness acceptability curves., Results: Full economic and outcome data at six months were available for 163 participants; GET = 51, COUN = 58 and BUC = 54. Those receiving the active therapies (GET and COUN) had more contacts with care professionals and therefore higher costs, these differences being statistically significant. COUN was more expensive and less effective than the other two therapies. The incremental cost-effectiveness ratio of GET compared to BUC was equal to £987 per unit of clinically significant improvement. However, there was much uncertainty around this result., Conclusion: This study does not provide a clear recommendation about which therapeutic option to adopt, based on efficiency, for patients with chronic fatigue. It suggests that COUN is not cost-effective, but it is unclear whether GET represents value for money compared to BUC. Clinical Trial Registration number at ISRCTN register: 72136156.

Purpose: To describe changes in utilisation of antiepileptic drugs (AED) by people with epilepsy in the United Kingdom during 1993-2008., Methods: Cohort study of 63,586 participants with epilepsy and prescribed AEDs from 434 UK family practices. Prescriptions for different AEDs and AED combinations were evaluated by calendar year, gender and age group., Results: Total follow-up was 361,207 person-years, with 282,080 person-years treated with AEDs and 79,126 person-years untreated. AED monotherapy accounted for 72.6% of treated person years of follow-up. Carbamazepine and valproates were among the most commonly used medications throughout 1993-2008. Phenytoin accounted for 39.5% of treated person-years in 1993 declining to 18.3% by 2008. Use of barbiturates declined from 14.3% in 1993 to 6.0% in 2008. In contrast between 1993 and 2008 there were substantial increases in the use of lamotrigine (2.0% to 17.0%) and to a lesser extent levetiracetam (0% to 8.6%). Newer AEDs were more frequently prescribed to younger participants, especially women aged 15-44 years, while older adults were more likely to be prescribed longer established AEDs. In 1993, 201 different AED combinations were prescribed, increasing to 500 different combinations in 2008. Combinations of sodium valproate and carbamazepine were frequent throughout, while sodium valproate and lamotrigine was frequent in 2008., Conclusions: Utilisation of newer AEDs in UK primary care has increased between 1993 and 2008 with increasing use of diverse combinations of AEDs. The data quantify exposure to AEDs relevant to planning analytical pharmaco-epidemiological studies, as well as providing information to inform prescribing policies., (Copyright © 2012 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

A rehabilitation approach has been adopted for many long-term neurologic conditions, but not for epilepsy. The disabilities associated with epilepsy are cognitive, psychological, and social, which are not as readily identified by medical doctors as are physical disabilities. A rehabilitation approach moves the emphasis from a medically driven process to a focus on the personal, social, and physical context of long-term illness. It is suggested that a missed opportunity for education and support for self-management occurs after diagnosis. This results in disadvantage to those whose educational level and knowledge of epilepsy are low. People who do not achieve epilepsy control may then experience higher levels of psychological distress, and a negative cycle of loss of self-efficacy, poor epilepsy control, social disadvantage, and disability. Rehabilitation services have benefited communities surrounding centers of excellence. Not so in epilepsy. Despite centers of excellence, areas with deprivation have higher than national average levels of patients reporting a seizure in the prior year, and higher emergency hospital admissions. Specialists working in partnership with general practitioners (GPs) and practice nurses can do more to increase participation and reduce distress for people with epilepsy. When available, GPs and nurses with special interest in epilepsy promote integrated services. Primary-secondary networks are likely to be more effective in preventing downward drift. This requires evaluation.

We explored the role of baseline characteristics of 105 patients who presented with fatigue in primary care in determining outcome following either graded exercise or cognitive-behavioural therapy. Meeting the criteria for chronic fatigue syndrome was the most powerful predictor of poor outcome and this negative effect was enhanced by greater functional impairment or greater perceived negative consequences, but was not further enhanced by both.