Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine.

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.

The effectiveness of a group self-management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial.

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.

The Economic Cost of Patients With Migraine Headache Referred to Specialist Clinics.

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.

A systematic review and narrative synthesis of group self-management interventions for adults with epilepsy.

BACKGROUND: Epilepsy is a serious and costly long-term condition that negatively affects quality of life, especially if seizures persist on medication. Studies show that people with epilepsy (PWE) want to learn more about the condition and some educational self-management courses have been trialled internationally. The objectives of this review were to evaluate research and summarise results on group self-management interventions for PWE. METHODS: We searched Medline and PsycINFO for results published in English between 1995 and 2015. Only studies evaluating face-to-face, group interventions for adults with epilepsy were included. Heterogeneity in study outcomes prevented the carrying out of a meta-analysis; however, a Cochrane style review was undertaken. RESULTS: We found eleven studies, nine of which were randomised controlled trials. There were variable standards of methodological reporting with some risk of bias. Seven of the studies used quality of life as an outcome, with four finding statistically significant improvements in mean total score. Two found an improvement in outcome subscales. One study included some additional semi-qualitative data. CONCLUSIONS: We identified promising trends in the trials reviewed. In particular, there were significant improvements in quality of life scales and seizure frequency in many of the interventions. However, considerable heterogeneity of interventions and outcomes made comparison between the studies difficult. Courses that included psychological interventions and others that had a high number of sessions showed more effect than short educational courses. Furthermore, the evidence was predominantly from pilot studies with small sample sizes and short follow-up duration. Further research is needed to better evaluate the role of group self-management interventions in outpatient epilepsy management.

Developing and assessing the acceptability of an epilepsy first aid training intervention for patients who visit UK emergency departments: A multi-method study of patients and professionals.

Epilepsy affects around 1% of the UK population; 40% of whom experience two or more seizures annually. However, most Emergency Department (ED) visits by people with epilepsy (PWE) are clinically unnecessary. Evidence highlights that with correct training, seizures can be safely managed by patients and their families within the community. Arguably therefore, PWE who frequently visit the ED might benefit from a self-management intervention that improves their own and their families' confidence and ability in managing seizures. Currently, no such intervention is available for PWE attending the ED. A collaborative approach (patients, carers, health professionals) was adopted to develop a patient-focused, self-management intervention. An existing group-based seizure management course, offered by the Epilepsy Society, was adapted. Collaborative feedback was sought via a base-line document review, one-to-one semi-structured interviews, and focus group discussions. The applied framework provided a systematic approach from development through to implementation. Participant feedback overall was extremely positive. People with epilepsy who visit the ED reported a positive view of epilepsy seizure first aid training and associated educational materials. Their feedback was then used to develop the optimized intervention presented here. Strengths and perceived barriers to successful implementation and participation, as well as the practical and psychosocial benefits, were identified. We describe the developed intervention together with the process followed. This description, while being project-specific, provides a useful template to assist in the development of interventions more generally. Ongoing evaluation will determine the effects of the training intervention on participants' behavior.

Frequency and factors associated with emergency department attendance for people with epilepsy in a rural UK population.

Attendance at UK Emergency Departments (EDs) for people with epilepsy (PWE) following a seizure can be unnecessary and costly. The characteristics of PWE attending a UK rural district ED in a 12-month period were examined to foster better understanding of relevant psycho-social factors associated with ED use by conducting cross-sectional interviews using standardized questionnaires. Of the total participants (n=46), approximately one-third of the study cohort attended ED on three or more occasions in the 12-month study period and accounted for 65% of total ED attendances reported. Seizure frequency and lower social deprivation status were associated with increased ED attendance while factors such as knowledge of epilepsy, medication management, and stigma were not. Similarities in frequency of repeat attendees were comparable to a study in urban population but other factors varied considerable. Our findings suggest that regular ED attendees may be appropriate for specific enhanced intervention though consideration needs to be given to the fact that population characteristics may vary across regions.

Self-management for people with poorly controlled epilepsy: Participants' views of the UK Self-Management in epILEpsy (SMILE) program.

BACKGROUND: Epilepsy is a long-term condition that requires self-management, but currently, there is no well-evaluated epilepsy self-education or self-management intervention in the United Kingdom (UK). AIM: The aim of this study was to examine the views and experiences of the first participants of the Self-Management in epILEpsy UK (SMILE UK) program to assist the development of a full trial. METHOD: In-depth semistructured interviews and group discussions were conducted with 10 people with poorly controlled epilepsy to explore their views and experiences of the self-management program. Interviews were audio-recorded, transcribed, and analyzed thematically. RESULTS: All participants viewed the program positively. Three themes emerged: i) peer support was experienced through knowledge sharing, disclosure of experiences, and exchange of contact details; ii) participants felt better equipped to enter discussions with doctors and other health-care professionals about their condition; and iii) participants reported an improvement in their personal life through increased confidence to live with epilepsy and acceptance of their diagnosis. CONCLUSION: A brief group self-management intervention increased knowledge and confidence in managing epilepsy.

Patients' experiences of a behavioural intervention for migraine headache: a qualitative study.

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.

Clopidogrel as prophylactic treatment for migraine: a pilot randomised, controlled study.

INTRODUCTION: Anecdotal reports suggest that clopidogrel may prevent migraine attacks. We undertook a pilot randomised trial. METHOD: We randomised consecutive migraineurs with four to 15 headache days per 28-day month to receive clopidogrel 75 mg or placebo daily for three months. Headache was primarily assessed with a headache diary. RESULTS: There were no statistically significant treatment effects. The number of headache days fell by 1.9 on clopidogrel and 1.6 on placebo (adjusted difference 0.02, CI -2.07 to 2.12). Headache severity rose by 0.14 points (out of 10) on clopidogrel, and fell by 0.63 on placebo; treatment effect 0.7 points (CI -0.11 to 1.57). The main treatment effect did not depend on the presence or absence of migraine with aura at baseline, a patent foramen ovale (PFO) or atrial septal aneurysm. DISCUSSION: The evidence is inconclusive, but a multicentre trial would be feasible recruiting from primary care.

Self-Management education for adults with poorly controlled epILEpsy (SMILE (UK)): a randomised controlled trial protocol.

BACKGROUND: Teaching people with epilepsy to identify and manage seizure triggers, implement strategies to remember to take antiepileptic drugs, implement precautions to minimize risks during seizures, tell others what to do during a seizure and learn what to do during recovery may lead to better self-management. No teaching programme exists for adults with epilepsy in the United Kingdom although a number of surveys have shown patients want more information. METHODS/DESIGN: This is a multicentre, pragmatic, parallel group randomised controlled trial to evaluate the effectiveness and cost-effectiveness of a two-day Self-Management education for epILEpsy (SMILE (UK)), which was originally developed in Germany (MOSES).Four hundred and twenty eight adult patients who attended specialist epilepsy outpatient clinics at 15 NHS participating sites in the previous 12 months, and who fulfil other eligibility criteria will be randomised to receive the intervention (SMILE (UK) course with treatment as usual- TAU) or to have TAU only (control). The primary outcome is the effect on patient reported quality of life (QoL). Secondary outcomes are seizure frequency and psychological distress (anxiety and depression), perceived impact of epilepsy, adherence to medication, management of adverse effects from medication, and improved self-efficacy in management (mastery/control) of epilepsy.Within the trial there will be a nested qualitative study to explore users' views of the intervention, including barriers to participation and the perceived benefits of the intervention. The cost-effectiveness of the intervention will also be assessed. DISCUSSION: This study will provide quantitative and qualitative evidence of the impact of a structured self management programme on quality of life and other aspects of clinical and cost effectiveness in adults with poorly controlled epilepsy. TRIAL REGISTRATION: Current Controlled Trials: ISRCTN57937389.

Service users' preferences and feasibility - which alternative care pathway for adult ambulance users achieves the optimal balance? Workshops for the COLLABORATE project.

INTRODUCTION: Adults presenting to the ambulance service for diagnosed epilepsy are often transported to emergency departments (EDs) despite no clinical need. An alternative care pathway (CP) could allow paramedics to divert them from ED and instigate ambulatory care improvements. To identify the most promising CP configuration for subsequent testing, the COLLABORATE project surveyed people with epilepsy and family/friends who had recently used the English ambulance service to elicit preferences for 288 CP configurations for different seizures. This allowed CPs to be ranked according to alignment with service users' preferences. However, as well as being acceptable to users, a CP must be feasible. We thus engaged with paramedics, epilepsy specialists and commissioners to identify the optimal configuration. METHODS: Three Knowledge Exchange workshops completed. Participants considered COLLABORATE's evidence on service users' preferences for the different configurations. Nominal group techniques elicited views on the feasibility of users' preferences according to APEASE criteria. Workshop groups specified the configuration/s considered optimum. Qualitative data was analysed thematically. Utility to users of the specified CP configurations estimated using the COLLABORATE preference survey data. RESULTS: Twenty-seven participants found service users' preferences broadly feasible and outlined delivery recommendations. They identified enough commonality in preferences for different seizures to propose a single CP. Its configuration comprised: 1) patients staying where they were; 2) paramedics having access to medical records; 3) care episodes lasting <6 h; 4) paramedics receiving specialist advice on the day; 5) patient's GP being notified; and 6) a follow-up appointment being arranged with an epilepsy specialist. Preference data indicated higher utility for this configuration compared to current care. DISCUSSION: Stakeholders are of the view that the CP configuration favoured by service users could be NHS feasible. It should be developed and evaluated.

Developing an alternative care pathway for emergency ambulance responses for adults with epilepsy: A Discrete Choice Experiment to understand which configuration service users prefer. Part of the COLLABORATE project.

INTRODUCTION: To identify service users' preferences for an alternative care pathway for adults with epilepsy presenting to the ambulance service. METHODS: Extensive formative work (qualitative, survey and knowledge exchange) informed the design of a stated preference discrete choice experiment (DCE). This hypothetical survey was hosted online and consisted of 12 binary choices of alternative care pathways described in terms of: the paramedic's access to medical records/ 'care plan', what happens next (described in terms of conveyance), time, availability of epilepsy specialists today, general practitioner (GP) notification and future contact with epilepsy specialists. DCE scenarios were described as: (i) typical seizure at home. (ii) typical seizure in public, (iii) atypical seizure. Respondents were recruited by a regional English ambulance service and by national public adverts. Participants were randomised to complete 2 of the 3 DCEs. RESULTS: People with epilepsy (PWE; n = 427) and friends/family (n = 167) who completed the survey were representative of the target population. PWE preferred paramedics to have access to medical records, non-conveyance, to avoid lengthy episodes of care, availability of epilepsy specialists today, GP notification, and contact with epilepsy specialists within 2-3 weeks. Significant others (close family members or friends) preferred PWE experiencing an atypical seizure to be conveyed to an Urgent Treatment Centre and preferred shorter times. Optimal configuration of services from service users' perspective far out ranked current practice (rank 230/288 possible configurations). DISCUSSION: Preferences differ to current practice but have minimal variation by seizure type or stakeholder. Further work on feasibility of these pathways in England, and potentially beyond, is required.

Decision-making by ambulance clinicians in London when managing patients with epilepsy: a qualitative study.

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.

Characteristics of people with epilepsy who attend emergency departments: prospective study of metropolitan hospital attendees.

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.

Explanations given by people with epilepsy for using emergency medical services: a qualitative study.

Half of the people with epilepsy (PWE) in the UK experience seizures and 13-18% attend emergency medical services (EMS) annually. The majority of attendances are regarded as clinically unjustified. This study describes PWE explanations for using EMS. A nested qualitative study, part of a larger study based in three South London hospitals, was conducted. Semi-structured interviews were recorded, transcribed, and analyzed thematically. A seizure alone was not the main explanation for attending EMS; knowledge, experience, and confidence of those nearby on what to do and seizure context were important. Additionally, fears of sudden death held by the PWE and others were reported. From the patients' perspective, use of EMS is regarded as appropriate when they are away from home or someone nearby lacks knowledge of seizure management. Hospitals could provide regular group sessions on seizure management for PWE and their significant others, in which fears are discussed and evaluated.

Cost-effectiveness of counselling, graded-exercise and usual care for chronic fatigue: evidence from a randomised trial in primary care.

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.

Service use and costs for people with headache: a UK primary care study.

This paper aims to estimate the service and social costs of headache presenting in primary care and to identify predictors of headache costs. Patients were recruited from GP practices in England and service use and lost employment recorded. Predictors of cost were identified using regression models. Service and social costs were available on 288 and 282 patients, respectively. Average service costs over 3 months were £117 whilst total costs (including lost production) were £582. Patients referred to neurologists had service costs that were £82 higher than those not referred (90% CI £36-£128). Costs including lost employment were higher by £150, but this was not significant (90% CI -£139-£439). The annual mean service and social costs, weighted to represent population rates of referral, were £468 and £2328, respectively. Higher costs were significantly related to pain. Age was linked to higher service costs and lower social costs. The figures extrapolated to the whole of the UK suggest £956 million due to service use and £4.8 billion including lost employment. These are likely to be underestimates because many people experiencing headaches do not consult their GP.

Best care for older people with epilepsy: A scoping review.

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.

Epilepsy and mortality: a retrospective cohort analysis with a nested case-control study identifying causes and risk factors from primary care and linkage-derived data.

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.

The hidden cost of chronic fatigue to patients and their families.

BACKGROUND: Nearly 1 in 10 in the population experience fatigue of more than six months at any one time. Chronic fatigue is a common reason for consulting a general practitioner, and some patients report their symptoms are not taken seriously enough. A gap in perceptions may occur because doctors underestimate the impact of fatigue on patients' lives. The main aim of the study is to explore the economic impact of chronic fatigue in patients seeking help from general practitioners and to identify characteristics that explain variations in costs. METHODS: The design of study was a survey of patients presenting to general practitioners with unexplained chronic fatigue. The setting were 29 general practice surgeries located in the London and South Thames regions of the English National Health Service. Use of services over a six month period was measured and lost employment recorded. Regression models were used to identify factors that explained variations in these costs. RESULTS: The mean total cost of services and lost employment across the sample of 222 patients was 3878 pounds for the six-month period. Formal services accounted for 13% of this figure, while lost employment accounted for 61% and informal care for 26%. The variation in the total costs was significantly related to factors linked to the severity of the condition and social functioning. CONCLUSIONS: The economic costs generated by chronic fatigue are high and mostly borne by patients and their families. Enquiry about the functional consequences of fatigue on the social and occupational lives of patients may help doctors understand the impact of fatigue, and make patients feel better understood.