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.

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.

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.

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study.

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.

Seizure First Aid Training For people with Epilepsy (SAFE) frequently attending emergency departments and their significant others: results of a UK multi-centre randomised controlled pilot trial.

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.

Clinically unnecessary and avoidable emergency health service use for epilepsy: A survey of what English services are doing to reduce it.

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.

Developing patient-centred, feasible alternative care for adult emergency department users with epilepsy: protocol for the mixed-methods observational 'Collaborate' project.

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.

Should GPs have direct access to imaging for headache? A qualitative study of patients' views in the UK.

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.

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.

Assessing Treatment Fidelity within an Epilepsy Randomized Controlled Trial: Seizure First Aid Training for People with Epilepsy Who Visit Emergency Departments.

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.

Views of People With Epilepsy About Web-Based Self-Presentation: A Qualitative Study.

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.

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

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.

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.

A comparison of the responsiveness of EQ-5D-5L and the QOLIE-31P and mapping of QOLIE-31P to EQ-5D-5L in epilepsy.

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.

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.

Primary care management of headaches and how direct-access MRI fits: a qualitative study of UK general practitioners' views.

OBJECTIVES: To develop a better understanding of general practitioners' (GPs) views and experiences of the management of patients with headaches and use of direct-access MRI scans, and observe outcomes of an educational session offered by a GP with a special interest (GPwSI) to GPs. DESIGN: A qualitative study using semistructured interviews, analysed using thematic analysis. A GPwSI in headaches visited practices delivering a talk on headache medication, diagnosis and management. SETTING: Sixteen (16) primary care family practices in South London, UK. PARTICIPANTS: Twenty (20) GPs. RESULTS: Not all GPs were aware of the availability of direct-access MRI, but all acknowledged having used referral or direct scans to manage patients' concern about their headaches. A normal scan result helped resolve uncertainty for patient and GP and helped management towards discussion of preventative treatment. However, patients with psychological and/or severe headache symptoms could not necessarily be reassured. GPs reported difficulty interpreting radiology reports, particularly incidental abnormalities. Those who received the educational talk gained knowledge in diagnosis and medication, improving their confidence in management. CONCLUSIONS: Increased access to imaging, training in headache management, addressing physical and psychological symptoms and standardised reporting of scans may improve GPs' use of direct-access MRI in the future.

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.