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How to refer to someone with epilepsy is a divisive topic. Arguments for and against different approaches, including traditional adjective labels, disability-first labels, and person-first terms have been presented. The preferences of those with epilepsy and their family and friends have, though, never been determined. This study provides this information for the first time. Via epilepsy interest groups and organizations in the UK and Republic of Ireland, 638 patients and 333 significant others completed an online survey. Three distinct phrases were presented: "They're epileptic" (traditional label), "They're an epileptic person" (disability-first) and "That person has epilepsy" (person-first). Participants identified which they preferred and explained their choices. Patients' median age was 39, with 69% having experienced seizures in the prior 12months. Significant others were typically parents. Most (86.7%) patients and significant others (93.4%) favored the person-first term. Traditional and disability-first terms were "Disliked"/"Strongly disliked". Regression found it was not possible to reliably distinguish between participants favoring the different terms on the basis of demographics. Qualitative analysis of answers to open-ended questions, however, revealed most favored person-first terminology as by not including the word 'epileptic' and by affirming personhood before disability, it was felt to less likely restrict a listener's expectations or evoke the condition's negative association. It was also considered to suggest the person being referred to might have some mastery over their condition. The findings indicate consensus amongst these key stakeholders others for the use of person-first terminology in English. A truly informed debate on the topic can now begin.

The advantages and disadvantages of using "epileptic" as a noun to describe someone with epilepsy have long been debated. Recent high-profile recommendations have stated that the term should not be used, including in English, as it perpetuates stigma. This decision was largely informed by a Brazilian Global Campaign Against Epilepsy study that reported experimental evidence indicating that, with students, the label evokes more negative attitudes than "person with epilepsy". The generalizability of this effect to different countries/cultures, and thus the justification for the recommendations, has never been tested.We replicated the Brazilian study in the UK, in English, while also addressing methodological limitations. It was powered to detect the effects reported by the Brazilian study, with 234 students completing a survey regarding epilepsy attitudes. Half were randomized to Group 1 and half to Group 2. In Group 1, patients were referred to as "people/person with epilepsy" within the attitudinal measures, while in Group 2 they were referred to as "epileptic/s". Measures included translations of the questions used in the Brazilian study and the Attitudes and Beliefs about Living with Epilepsy scale. Participants' epilepsy familiarity and knowledge were also assessed.The two groups were comparable in characteristics. A comparison of their responses to the attitude measures revealed no statistically significant or meaningful differences.In this English replication, the word "epileptic" did not provoke more negative attitudes. This suggests that the effect reported by the Brazilian study might be culturally dependent. Methodological limitations to that study might also be relevant. Our results have implications for the global debate about how negative attitudes towards epilepsy might be addressed. Simply not saying "epileptic" may not promote the positive attitudes towards epilepsy that had been expected. To know how to best refer to those with epilepsy, evidence on the preferences of those actually living with epilepsy is needed.

Cognitive dysfunction is a common comorbidity in people with epilepsy, but its causes remain unclear. It may be related to the etiology of the disorder, the consequences of seizures, or the effects of antiepileptic drug treatment. Genetics may also play a contributory role. We investigated the influence of variants in the genes encoding neuron-restrictive silencer factor (NRSF) and brain-derived neurotrophic factor (BDNF), proteins previously associated with cognition and epilepsy, on cognitive function in people with newly diagnosed epilepsy. A total of 82 patients who had previously undergone detailed neuropsychological assessment were genotyped for single nucleotide polymorphisms (SNPs) across the NRSF and BDNF genes. Putatively functional SNPs were included in a genetic association analysis with specific cognitive domains, including memory, psychomotor speed, and information processing. Cross-sectional and longitudinal designs were used to explore genetic influences on baseline cognition at diagnosis and change from baseline over the first year since diagnosis, respectively. We found a statistically significant association between genotypic variation and memory function at both baseline (NRSF: rs1105434, rs2227902 and BDNF: rs1491850, rs2030324, rs11030094) and in our longitudinal analysis (NRSF: rs2227902 and BDNF: rs12273363). Psychomotor speed was also associated with genotype (NRSF rs3796529) in the longitudinal assessment. In line with our previous work on general cognitive function in the healthy aging population, we observed an additive interaction between risk alleles for the NRSF rs2227902 (G) and BDNF rs6265 (A) polymorphisms which was again consistent with a significantly greater decline in delayed recall over the first year since diagnosis. These findings support a role for the NRSF–BDNF pathway in the modulation of cognitive function in patients with newly diagnosed epilepsy., Highlights • Cognitive dysfunction is a common and important comorbidity in people with epilepsy. • Causes of cognitive problems are unknown, but genetics may be involved. • We compared NRSF and BDNF gene variants with cognition in new-onset epilepsy. • Deterioration in memory task scores from baseline was associated with genotype. • The NRSF/BDNF pathway may be relevant to cognitive function in people with epilepsy.

A significant body of research highlights negative impacts of epilepsy for individual quality of life (QOL). Poor seizure control is frequently associated with reporting of poor QOL and good seizure control with good QOL; however, this is not a universal finding. Evidence suggests that some people enjoy good QOL despite ongoing seizures while others report poor QOL despite good seizure control. Understanding the factors that influence QOL for people with epilepsy and the processes via which such factors exert their influence is central to the development of interventions to support people with epilepsy to experience the best possible QOL. We present findings of a qualitative investigation exploring influences and processes on QOL for people with epilepsy. We describe the clinical, psychological, and social factors contributing to QOL. In particular, we focus on the value of the concept of resilience for understanding quality of life in epilepsy. Based on our analysis, we propose a model of resilience wherein four key component sets of factors interact to determine QOL. This model reflects the fluid nature of resilience that, we suggest, is subject to change based on shifts within the individual components and the interactions between them. The model offers a representation of the complex influences that act and interact to either mitigate or further compound the negative impacts of epilepsy on individual QOL.

Between 35% and 50% of patients with epilepsy are reported to be not fully adherent to their medication schedule. We aimed to conduct an economic evaluation of strategies for improving adherence to antiepileptic drugs. Based on the findings of a systematic review, we identified an implementation intention intervention (specifying when, where, and how to act) which was tested in a trial that closely resembled current clinical management of patients with epilepsy and which measured adherence with an objective and least biased method. Using patient-level data, trial patients were matched with those recruited for the Standard and New Antiepileptic Drugs trial according to their clinical characteristics and adherence. Generalized linear models were used to adjust cost and utility in order to estimate the incremental cost per quality-adjusted life-year (QALY) gained from the perspective of the National Health Service in the UK. The mean cost of the intervention group, £1340 (95% CI: £1132, £1688), was marginally lower than that of the control group representing standard care, £1352 (95% CI: £1132, £1727). Quality-adjusted life-year values in the intervention group were higher than those in the control group, i.e., 0.75 (95% CI: 0.70, 0.79) compared with 0.74 (95% CI: 0.68, 0.79), resulting in a cost saving of £12 (€15, US$19) and with the intervention being dominant. The probability that the intervention is cost-effective at a threshold of £20,000 per QALY is 94%. Our analysis lends support to the cost-effectiveness of a self-directed, implementation intention intervention for improving adherence to antiepileptic drugs. However, as with any modeling dependent on limited data on efficacy, there is considerable uncertainty surrounding the clinical effectiveness of the intervention which would require a substantive trial for a more definitive conclusion.

Purpose The pattern of executive dysfunction reported in juvenile myoclonic epilepsy (JME) resembles that of patients with cluster B personality disorders. This study examined whether executive dysfunction and maladaptive behavior reported in patients with JME are related. Method Sixty patients with drug-refractory JME were administered tests of intellect, memory, and executive dysfunction. Anxiety, depression, personality traits, impact of epilepsy, and perceived cognitive effects of antiepileptic drugs were measured. Results Half of the cohort exhibited moderate to severe anxiety symptoms. The patients performed most poorly on naming ability and inhibition switching. Duration of epilepsy exacerbated poor performance on inhibition switching. Females presented with pathological scores for neurotic and introvert traits and males for introvert traits. Abnormal personality traits and psychiatric disorders were associated with worse intellectual and executive functioning. People with extreme Eysenck Personality Scale — Brief Version (EPQ-BV) scores demonstrated the greatest level of executive impairment. Furthermore, the same degree of dysfunction was not seen in any individual with unremarkable EPQ-BV scores. Conclusion This study indicates that specific patterns of executive dysfunction are related to maladaptive behavior in JME. Distinct behavioral patterns may be used to identify functional and anatomical differences between people with JME and for stratification to enable gene discovery.

Previous research identifies loss as a key concept for our understanding of the impact of chronic illness. In this in-depth qualitative study, we explored the utility of the concept of loss and loss replacement as a means of gaining a fuller understanding of the implications of a diagnosis of epilepsy for overall quality of life (QOL). Potential participants were identified from the database of a large UK-based randomized controlled trial of antiepileptic drug treatment for new-onset epilepsy and selected using purposive sampling methods. In-depth interviews were conducted with 67 people; interview material was analyzed thematically. Our findings confirm 'loss' as a key concept in understanding epilepsy impact. Participants cited profound physical and social losses, and the links between these and psychological loss were clearly articulated. Informants described two main processes via which the linked losses they experienced occurred: personal withdrawal processes and externally enforced processes. Seizure control was integral to restoring psychological well-being and a sense of normality but was only one of a number of influences moderating the degree of loss experienced following seizure onset. Our work emphasizes that people with epilepsy (PWE) require active support for their continued engagement or reengagement in roles and activities identified as central to their psychological well-being and overall QOL. Achieving this requires a multiagency approach to drive forward key strategies for reduction of the negative impacts of epilepsy and to engender a sense of normality in the context of a condition often experienced as placing the individual outside the socially determined parameters of the 'normal'.