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

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

Characteristics associated with quality of life among people with drug-resistant epilepsy

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

Fatigue Intervention by Nurses Evaluation - The FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol. [ISRCTN74156610]

Background: Chronic fatigue syndrome, also known as ME (CFS/ME), is a condition characterised primarily by severe, disabling fatigue, of unknown origin, which has a poor prognosis and serious personal and economic consequences. Evidence for the effectiveness of any treatment for CFS/ME in primary care, where most patients are seen, is sparse. Recently, a brief, pragmatic treatment for CFS/ME, based on a physiological dysregulation model of the condition, was shown to be successful in improving fatigue and physical functioning in patients in secondary care. The treatment involves providing patients with a readily understandable explanation of their symptoms, from which flows the rationale for a graded rehabilitative plan, developed collaboratively with the therapist. The present trial will test the effectiveness and cost-effectiveness of pragmatic rehabilitation when delivered by specially trained general nurses in primary care. We selected a client-centred counselling intervention, called supportive listening, as a comparison treatment. Counselling has been shown to be as effective as cognitive behaviour therapy for treating fatigue in primary care, is more readily available, and controls for supportive therapist contact time. Our control condition is treatment as usual by the general practitioner (GP). Methods and design: This study protocol describes the design of an ongoing, single-blind, pragmatic randomized controlled trial of a brief (18 week) self-help treatment, pragmatic rehabilitation, delivered by specially trained nurse-therapists in patients' homes, compared with nurse-therapist delivered supportive listening and treatment as usual by the GP. An economic evaluation, taking a societal viewpoint, is being carried out alongside the clinical trial. Three adult general nurses were trained over a six month period to deliver the two interventions. Patients aged over 18 and fulfilling the Oxford criteria for CFS are assessed at baseline, after the intervention, and again one year later. Primary outcomes are self-reported physical functioning and fatigue at one year, and will be analysed on an intention-to-treat basis. A qualitative study will examine the interventions' mechanisms of change, and also GPs' drivers and barriers towards referral

Why do GPs with a special interest in headache investigate headache presentations with neuroradiology and what do they find?

The general practitioner with a special interest in headache offers an important contribution to the management of headache in primary care where the majority of presentations take place. A number of guidelines have been developed for neuroradiological investigation of headache, but their clinical utility and relevance is not known. Fourteen general practitioners with a special interest in headache recorded consecutive headache consultations over a 3-month period, whether patients were investigated with neuroradiology and if so the reason for investigation and outcome. Reason for investigation was compared to the guidelines published for the use in primary care. 895 patients were seen, of whom 270 (30.1%) were investigated. 47% of indications were outside the guidance framework used, the most common reason for investigation being reassurance. Of those investigated, 5.6% showed positive findings but only 1.9% of findings were felt to be of clinical significance. General practitioners with a special interest investigated with neuroradiology a greater level than general practitioners, but less than neurologists. However, yields of significant findings are broadly comparative across all groups. This report confirms other studies that suggest that even when there is a high level of clinical suspicion, yields of significant findings are very low

A 'real puzzle': the views of patients with epilepsy about the organisation of care

BACKGROUND: Little is known about how individuals who have a diagnosis of epilepsy have experienced healthcare services or their views about how they should best be organised to meet their ongoing needs. METHODS: Focus group interviews. Individuals with epilepsy were identified in 5 practices in Wales: 90 were invited, 40 confirmed attendance and 19 individuals attended interviews in 5 groups of size 6, 5, 4, 3 and 1 (Table 2). Inclusion criteria: individuals with a confirmed diagnosis of epilepsy, aged between 18–65. The exclusion criteria were learning disability or an inability to travel to interview locations. RESULTS: The individuals in these group interviews were not 'epilepsy activists' yet they remained critical in extended discussions about the services encountered during their patient careers, wanting more information and advice about how to adapt to problems, particularly after initial diagnosis, more involvement in decision making, rapid access to expertise, preferably local, and improved communication between clinicians. A central concern was the tendency for concerns to be silenced, either overtly, or covertly by perceived haste, so that they felt marginalised, despite their own claims to own expert personal knowledge. CONCLUSIONS: Users of existing services for epilepsy are critical of current systems, especially the lack of attention given to providing information, psychosocial support and the wishes of patients to participate in decision making. Any reorganisation of services for individuals with epilepsy should take into account these perceived problems as well as try to reconcile the tension between the distant and difficult to access expertise of specialists and the local but unconfident support of generalists. The potential benefit of harnessing information technology to allow better liaison should be investigated

LEF-1 drives aberrant β-catenin nuclear localization in myeloid leukemia cells

Canonical Wnt/β-catenin signaling is frequently dysregulated in myeloid leukemias and is implicated in leukemogenesis. Nuclear-localized β-catenin is indicative of active Wnt signaling and is frequently observed in acute myeloid leukemia patients; however, some patients exhibit little or no nuclear β-catenin even where cytosolic β-catenin is abundant. Control of the subcellular localization of β-catenin therefore represents an additional mechanism regulating Wnt signaling in hematopoietic cells. To investigate the factors mediating the nuclear-localization of β-catenin we carried out the first nuclear/cytoplasmic proteomic analysis of the β-catenin interactome in myeloid leukemia cells and identified putative novel β-catenin interactors. Comparison of interacting factors between Wnt-responsive cells (high nuclear β-catenin) versus Wnt-unresponsive cells (low nuclear β-catenin) suggested the transcriptional partner, LEF-1, could direct the nuclear-localization of β-catenin. The relative levels of nuclear LEF-1 and β-catenin were tightly correlated in both cell lines and in primary AML blasts. Furthermore, LEF-1 knockdown perturbed β-catenin nuclear-localization and transcriptional activation in Wnt-responsive cells. Conversely, LEF-1 overexpression was able to promote both nuclear-localization and β-catenin-dependent transcriptional responses in previously Wnt-unresponsive cells. This is the first β-catenin interactome study in hematopoietic cells and reveals LEF-1 as a mediator of nuclear β-catenin level human myeloid leukemia

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

PurposeEpilepsy 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.MethodsWe 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.Results72/87 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.ConclusionReducing 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

A study of general practitioners' perspectives on electronic medical records systems in NHS Scotland

<b>Background</b> Primary care doctors in NHSScotland have been using electronic medical records within their practices routinely for many years. The Scottish Health Executive eHealth strategy (2008-2011) has recently brought radical changes to the primary care computing landscape in Scotland: an information system (GPASS) which was provided free-of-charge by NHSScotland to a majority of GP practices has now been replaced by systems provided by two approved commercial providers. The transition to new electronic medical records had to be completed nationally across all health-boards by March 2012. <p></p><b> Methods</b> We carried out 25 in-depth semi-structured interviews with primary care doctors to elucidate GPs' perspectives on their practice information systems and collect more general information on management processes in the patient surgical pathway in NHSScotland. We undertook a thematic analysis of interviewees' responses, using Normalisation Process Theory as the underpinning conceptual framework. <p></p> <b>Results</b> The majority of GPs' interviewed considered that electronic medical records are an integral and essential element of their work during the consultation, playing a key role in facilitating integrated and continuity of care for patients and making clinical information more accessible. However, GPs expressed a number of reservations about various system functionalities - for example: in relation to usability, system navigation and information visualisation. <b>Conclusion </b>Our study highlights that while electronic information systems are perceived as having important benefits, there remains substantial scope to improve GPs' interaction and overall satisfaction with these systems. Iterative user-centred improvements combined with additional training in the use of technology would promote an increased understanding, familiarity and command of the range of functionalities of electronic medical records among primary care doctors