Young people diagnosed with psychogenic nonepileptic seizures (PNES) years ago - How are they now?

BACKGROUND: Up to 30% of patients referred to epilepsy centres for drug-resistant epilepsy turn out to have psychogenic nonepileptic seizures (PNES). Patients with PNES are a very heterogeneous population with large differences in regard to underlying causes, seizures severity, and impact on quality of life. There is limited knowledge regarding the long-term seizure prognosis of youth with PNES and its influential factors. METHODS: We have performed a retrospective study on adolescents diagnosed with PNES who were receiving inpatient care at our hospital for 2-4 weeks in the period of 2012-2020. They all attended psychoeducational courses to educate them about PNES, coping with the seizures, and possible contributors to seizure susceptibility. There were 258 patients who fulfilled the inclusion criteria. We contacted them by text messages, through which they received brief information about the study and an invitation to participate. There were 62 patients (24 %) who agreed and participated in structured telephone interviews. We excluded 10 patients due to concomitant epilepsy. The mean age of the remaining 52 participants was 20.9 years (16-28 years), and 45 (87 %) were women. RESULTS: After a mean of 4.7 years (2-9 years) since discharge from our hospital, 28 patients (54 %) had been free of seizures in the last 6 months. There were 16 patients (31 %) who had better situations in regard to seizures but were not completely seizure free, while 8 patients (15 %) were either unchanged (3 patients) or worse (5 patients). There were 39 patients (75 %) who had received conversation therapy, and 37 patients (71 %) had been treated by a psychologist or psychiatrist. There were 10 patients (19 %) who had dropped out of school or work, and the percentage increased with age. There were 42 patients (80 %) who perceived their health as good or very good. CONCLUSION: Patients had a relatively favourable seizure prognosis as 54% were free of seizures and 31% had a better seizure situation, at the time of this study. However, the fact that 19% had dropped out of school or work was worrying. Young age and satisfaction with treatment were associated with being employed or receiving education. Satisfaction with perceived treatment was significantly associated with personal experience of good health. This emphasizes the importance of early diagnosis, adapted interventional measures, and long-term follow-up by healthcare for young people with PNES.

Health-related quality of life in adults with drug-resistant focal epilepsy treated with modified Atkins diet in a randomized clinical trial.

Ketogenic diet, a high-fat, low-carbohydrate diet, is an established treatment for patients with severe epilepsy. We have previously reported a moderate reduction in seizure frequency after treatment with a modified Atkins diet. This study aimed to see whether dietary therapy impacts patients' health-related quality of life (HRQOL). In a randomized controlled design, we compared the change in self-reported HRQOL among adults with difficult-to-treat epilepsy after a 12-week diet intervention. Thirty-nine patients with drug-resistant focal epilepsy (age = 16-65 years) were randomized to eat a modified Atkins diet with maximum 16 g of carbohydrate per day (diet group, n = 19) or to continue eating habitual diet (control group, n = 20). No changes to the other epilepsy treatments were allowed. Patient-reported HRQOL was assessed with the Quality of Life in Epilepsy Inventory-89 (QOLIE-89). The diet group experienced a statistically significant improvement in mean total score of QOLIE-89 of 10 points compared to controls (p = .002). Moreover, although not statistically significant when using a cutoff of 50% seizure reduction, our data suggest an association between diet-induced reduction in seizure frequency and improvement in HRQOL. The improvement in HRQOL was not associated with diet-induced weight reduction.

Adverse life events in patients with functional seizures: Assessment in clinical practice and association with long-term outcome.

BACKGROUND: A history of adverse life events (ALE) is a risk factor for functional seizures (FS). Their influence on long-term outcome remains unclear. International guidelines recommend assessing ALE in patients presenting with associated disorders. It is not clear to what extent patients evaluated for FS are regularly asked about ALE. OBJECTIVES: We hypothesised that the presence of ALE would relate to worse outcome at follow-up and, that the rate of detection of ALE in clinical work-up would be inferior to that based on self-report questionnaires. METHODS: 53 patients with FS from the National Centre for Epilepsy in Norway, aged 16-62 years were included. Symptom severity, health-related quality of life (HRQoL), and antecedent ALE were assessed at baseline. Medical records were examined for disclosure of ALE. At a mean of 70.45 (SD 29.0, range 22-130) months after inclusion, participants were inquired about FS status, FS-related health care utilization and HRQoL. FINDINGS: A history of emotional abuse documented in the medical record was an independent risk factor for worse HRQoL at follow-up. Prevalence of ALE documented in medical records was lower compared with rates measured by a self-report questionnaire. CONCLUSIONS: These findings indicate an association between antecedent ALE and HRQoL years after diagnosis. A substantial proportion of the adverse life events by a self-report questionnaire had not been documented in the clinical records. CLINICAL IMPLICATIONS: The supplemental use of a self-report questionnaire in the diagnostic work-up of patients with FS may be valuable for detecting ALE.

Norwegian population-based study of long-term effects, safety, and predictors of response of vagus nerve stimulation treatment in drug-resistant epilepsy: The NORPulse study.

OBJECTIVE: This study was undertaken to evaluate the efficacy of vagus nerve stimulation (VNS) over time, and to determine which patient groups derive the most benefit. METHODS: Long-term outcomes are reported in 436 epilepsy patients from a VNS quality registry (52.8% adults, 47.2% children), with a median follow-up of 75 months. Patients were stratified according to evolution of response into constant responders, fluctuating responders, and nonresponders. The effect was evaluated at 6, 12, 24, 36, and 60 months. Multivariate regression analysis was used to identify predictors of response. RESULTS: The cumulative probability of ≥50% seizure reduction was 60%; however, 15% of patients showed a fluctuating course. Of those becoming responders, 89.5% (230/257) did so within 2 years. A steady increase in effect was observed among constant responders, with 48.7% (19/39) of those becoming seizure-free and 29.3% (39/133) with ≥75% seizure reduction achieving these effects within 2-5 years. Some effect (25%-<50%) at 6 months was a positive predictor of becoming a responder (odds ratio [OR] = 10.18, p < .0001) and having ≥75% reduction at 2 years (OR = 3.34, p = .03). Patients without intellectual disability had ORs of 3.34 and 3.11 of having ≥75% reduction at 2 and 5 years, respectively, and an OR of 6.22 of being seizure-free at last observation. Patients with unchanged antiseizure medication over the observation period showed better responder rates at 2 (63.0% vs. 43.1%, p = .002) and 5 years (63.4% vs. 46.3%, p = .031) than patients whose antiseizure medication was modified. Responder rates were higher for posttraumatic (70.6%, p = .048) and poststroke epilepsies (75.0%, p = .05) than other etiologies (46.5%). SIGNIFICANCE: Our data indicate that the effect of VNS increases over time and that there are important clinical decision points at 6 and 24 months for evaluating and adjusting the treatment. There should be better selection of candidates, as certain patient groups and epilepsy etiologies respond more favorably.

Reappraisal of the Medical Research Council Antiepileptic Drug Withdrawal Study: Contamination-adjusted and dose-response re-analysis.

OBJECTIVE: The 1991 Medical Research Council (MRC) Study compared seizure relapse for seizure-free patients randomized to withdraw vs continue of antiseizure medications (ASMs). We re-analyzed this trial to account for crossover between arms using contamination-adjusted intention to treat (CA ITT) methods, to explore dose-response curves, and to validate predictions against external data. ITT assesses the effect of being randomized to withdraw, as-treated analysis assesses the confounded effect of withdrawing, but CA ITT assesses the unconfounded effect of actually withdrawing. METHODS: CA ITT involves two stages. First, we used randomized arm to predict whether patients withdrew their ASM (logistic) or total daily ASM dose (linear). Second, we used those values to predict seizure occurrence (logistic). RESULTS: The trial randomized 503 patients to withdraw and 501 patients to continue ASMs. We found that 316 of 376 patients (88%) who were randomized to withdraw decreased their dose at every pre-seizure visit, compared with 35 of 424 (8%) who were randomized to continue (p < .01). Adjusted odds ratios of a 2-year seizure for those who withdrew vs those who did not was 1.3 (95% confidence interval [CI] 0.9-1.9) in the as-treated analysis, 2.5 (95% CI 1.9-3.4) comparing those randomized to withdraw vs continue for ITT, and 3.1 (95% CI 2.1-4.5) for CA ITT. Probabilities (withdrawal vs continue) were 28% vs 24% (as-treated), 40% vs 22% (ITT), and 43% vs 21% (CA ITT). Differences between ITT and CA ITT were greater when varying the predictor (reaching zero ASMs) or outcome (1-year seizures). As-treated dose-response curves demonstrated little to no effects, but larger effects in CA ITT analysis. MRC data overpredicted risk in Lossius data, with moderate discrimination (areas under the curve ~0.70). SIGNIFICANCE: CA ITT results (the effect of actually withdrawing ASMs on seizures) were slightly greater than ITT effects (the effect of recommend withdrawing ASMs on seizures). How these findings affect clinical practice must be individualized.

Cognitive change after DBS in refractory epilepsy: A randomized-controlled trial.

OBJECTIVES: Deep brain stimulation of the anterior thalamic nucleus (ANT-DBS) reduces seizure frequency in patients with refractory epilepsy. There are, however, few studies on treatment-related changes in cognitive functions. The main objective of this study was to investigate cognitive changes in patients receiving ANT-DBS. We also explored whether possible effects were related to stimulation duration and whether change in seizure frequency was associated with cognitive changes. MATERIALS AND METHODS: Bilateral ANT electrodes were implanted in 18 patients with refractory epilepsy, aged 18-52 years. Immediately after implantation, patients were randomized to stimulation ON (n = 8) or OFF (n = 10) for the first 6 months (blinded phase). During the following 6-month open phase, both groups received stimulation. Neuropsychological assessments were conducted before implantation (T1), at the end of the blinded period (T2), and 1 year after implantation (T3). RESULTS: Groupwise comparisons across the three time points revealed changes in performance in two of 22 cognitive test scores: motor speed and sustained attention. We found no significant group differences in cognitive change from T1 to T2. Patients reported fewer symptoms of executive dysfunction after 12 months of stimulation. Patients showing significant improvement in seizure frequency had better performance in a measure of verbal learning. CONCLUSION: Our results indicate that ANT-DBS has very limited effects on cognitive functioning, as measured by formal tests after 6- or 12-month stimulation. ANT-DBS may have a positive influence on executive function. Our findings provide limited support for an association between change in seizure frequency and cognitive functioning.

The effect of attachment style on long-term outcomes in psychogenic nonepileptic seizures: Results from a prospective study.

INTRODUCTION: Insecure and fearful attachment styles have been reported in psychogenic nonepileptic seizures (PNES). We have investigated associations between long-term clinical outcome in PNES, parenting and attachment styles and demographic, clinical, and neuropsychiatric factors. MATERIAL AND METHODS: Patients aged at least 16 years and with documented PNES, according to criteria from the International League Against Epilepsy, were prospectively recruited to this study. They were assessed at baseline to determine clinical characteristics, experience of attachment and perceptions of experienced parenting styles, trauma history, dissociation, and health-related quality of life. At a mean of 70.45 (SD 29.0, range 22-130) months after inclusion, participants were contacted by telephone and asked about their current medical status and psychiatric/psychological interventions. RESULTS: Of 53 patients included in the study, 51 (96 %) provided follow-up data. Most (84.9 %) patients were female, and the mean age of PNES onset was 25.6 years. At follow-up, 20 patients (39 %) were free of PNES. Those patients that had achieved PNES freedom at follow-up had lower levels of attachment anxiety (p = 0.01) and reported to have experienced their fathers as less controlling (p = 0.02) and their mothers as more caring (p = 0.04) at baseline compared with those patients still suffering from PNES. Seizure freedom at follow-up was predicted by male gender, younger age at PNES onset, and less attachment anxiety. CONCLUSION: In our cohort from a tertiary epilepsy center the long-term prognosis of PNES is poor. Attachment anxiety is a risk factor for persistent PNES. It may be of therapeutic relevance to assess attachment patterns in patients with PNES.

Incidence and prevalence of psychogenic nonepileptic seizures in a Norwegian county: A 10-year population-based study.

OBJECTIVE: This study was undertaken to measure the incidence and prevalence of active psychogenic nonepileptic seizures (PNES) in a Norwegian county. METHODS: Using the Norwegian patient registry, we identified patients in Møre and Romsdal County in Norway diagnosed with F44.5 (conversion disorder with seizures or convulsions) or R56.8 (convulsions, not elsewhere classified) in the period January 2010 to January 2020. A review of the patients' medical records and an assessment of diagnostic validity were performed. PNES were diagnosed according to the recommendations by the International League Against Epilepsy Nonepileptic Seizures Task Force. Point prevalence of PNES on January 1, 2020 and incidence rates for the period 2010-2019 were determined. RESULTS: Based on PNES within the past 5 years, we found a PNES prevalence of 23.8/100 000 (95% confidence interval [CI] = 17.9-29.6), including all levels of diagnostic certainty. For the highest level of diagnostic certainty (video-electroencephalographically confirmed), the prevalence was 10.6/100 000 (95% CI = 6.7-14.5). The highest prevalence was found in the age group 15-19 years, at 59.5/100 000 (95% CI = 22.6-96.3). The mean annual incidence rate between 2010 and 2019 was 3.1/100 000/year (95% CI = 2.4-3.7). SIGNIFICANCE: We report for the first time a population-based estimate of the prevalence of PNES. Our findings suggest that the prevalence of PNES is within the range of estimates from non-population-based data. We found a strikingly high prevalence of PNES in the 15-19-year age group.

People with epilepsy still feel stigmatized.

OBJECTIVES: Those affected with epilepsy have long been subject to stigmatization. This may have manifold negative effects, for example social isolation, low self-esteem, reduced quality of life and worsening of seizures. In Norway educational programs have been arranged at the National Centre for Epilepsy, aiming at reducing stigma and shame associated with epilepsy, and thereby increase the quality of life for those affected and their families. Thus, we wanted to explore the extent of self-reported perceived stigma and experienced discrimination in a Norwegian cohort with epilepsy. MATERIALS AND METHODS: We conducted a web-based questionnaire survey in Norway. Participants were asked to provide background and epilepsy-related information. In addition, they were encouraged to answer questions regarding felt stigmatization in different situations and to rate stigma according to the Jacoby stigma scale. RESULTS: Of 1182 respondents, 56% reported to have felt being stigmatized, and 35% reported to have experienced discrimination solely on the ground of the disease. 70% of respondents reported at least one type of perceived or experienced stigma. After controlling for gender, age, perceived depression and seizure freedom, reports of experienced stigmatization was a statistically significant independent predictor for reduced quality of life. CONCLUSIONS: A considerable proportion of people with epilepsy in Norway feel stigmatized and/or subject to discrimination, which negatively affects their quality of life.

Effect and tolerability of perampanel in patients with drug-resistant epilepsy.

OBJECTIVE: Perampanel is one of the most recently approved antiseizure medications. The aim of the present study was to assess clinical efficacy and tolerability, in combination with pharmacokinetic variability, of perampanel treatment in patients at a tertiary referral center for epilepsy. METHODS: We performed a retrospective observational study of patients given perampanel as adjunctive treatment in the period January 2013 - February 2019 at the National Center for Epilepsy at Oslo University Hospital, Norway. RESULTS: Clinical data were available for 175 mainly adult patients with drug-resistant epilepsy with mean treatment duration of 16.1 months. We found that 23% (40 patients) were responders (i.e., achieving more than 50% reduction in seizure frequency), four of whom became seizure free, 29% (51 patients) experienced a modest effect, whereas for 29% (50 patients) perampanel had no seizure-reducing effect. A paradoxical effect, with seizure aggravation, was reported in 9% (15 patients). The responder rate was significantly higher in those with slow vs. fast dosage titration. Logistic regression analysis showed better efficacy among those with generalized vs. those with focal epilepsy. Adverse effects were reported by 135 patients (77%), ranging from mild (34%), to moderate (41%) and severe (2%). In 55 patients (41%), these adverse effects resulted in discontinuation of treatment with perampanel. The most frequent adverse effects were psychiatric symptoms (34%), dizziness (31%), and sleepiness (26%). Of the 31 patients for whom serum concentration measurements were available, the mean daily perampanel dose was 6.3 mg (SD 3.0), with a mean serum concentration at steady state of 1.03 µmol/L (range: 0.15-3.59 µmol/L). There were pronounced differences between patients, as demonstrated by a 12-fold variability in the range of concentration/dose (C/D)-ratios (0.06 to 0.69 µmol/L/mg), where enzyme inducers contributed. CONCLUSION: Our results demonstrate that perampanel had a modest seizure-reducing effect in this very treatment-resistant patient group. Predictors of treatment success were generalized epilepsy and slow dosage titration. In patients without a history of psychiatric problems, clinicians could consider increasing dose of perampanel beyond 6 mg daily, taking co-medication and serum concentrations into account.

Clinical experience combined with therapeutic drug monitoring of lacosamide.

OBJECTIVE: Lacosamide (LCM) is an antiepileptic drug (AED) with insufficient clinical experience in patients with intellectual disability (ID). They often have more severe epilepsy with comorbidities. The objective was to evaluate the efficacy and tolerability of lacosamide (LCM) in patients with refractory epilepsy with and without ID in a real-life setting, taking drug monitoring (TDM) data into account therapeutic. METHODS: Retrospectively, we identified 344 patients using LCM from the TDM service covering the majority of the country, at the National Center for Epilepsy in Norway (2013-2018). Clinical and TDM data were available for 132 patients. RESULTS: Forty-four of the 132 patients (33%) had ID. The retention rate was significantly higher in the ID vs the non-ID group after 1 year (84% vs 68%, P < .05). By combining clinical and TDM data, we demonstrated that 37/38 responding patients had serum concentrations above the lower limit of the reference range (>10 µmol/L), and 16/17 with lower concentrations were non-responders. Mean serum concentration/dose ratios were similar in both groups, 0.06 and 0.07 µmol/L/mg. There were no significant differences regarding efficacy and tolerability. The risk of LCM withdrawal was significantly higher when LCM was added to sodium channel blockers, even if the latter was discontinued. SIGNIFICANCE: Lacosamide was generally well tolerated in patients with drug-resistant epilepsy, where one third had ID, and in these patients the retention rate was higher. The combination of clinical and TDM data could possibly facilitate LCM therapy in these vulnerable patients.

How often do doctors discuss drug withdrawal with their seizure-free patients with epilepsy?

Among patients with epilepsy, almost 70% become seizure-free with the current antiseizure drugs (ASDs) within 20 years following seizure onset. Of those who have been seizure-free for many years, around 70% remain seizure-free after withdrawal of ASDs. The purpose of this study was to determine the extent to which seizure-free patients with epilepsy in Norway discuss drug discontinuation with their physician. An online questionnaire was used; among the respondents were 186 adult patients who had been seizure-free for at least five years and were still using ASDs. Of these, 60 patients (32%) reported that they had discussed the question of drug withdrawal with their treating physician. Those patients who reported being involved in treatment decisions were more likely to have discussed ASD withdrawal. In conclusion, it is our opinion that discontinuation of drug treatment in patients with long-term seizure freedom is discussed far too seldom and that many patients may be living with an unnecessary drug burden.

A European questionnaire survey on epilepsy monitoring units' current practice for postoperative psychogenic nonepileptic seizures' detection.

BACKGROUND: In cases undergoing epilepsy surgery, postoperative psychogenic nonepileptic seizures (PNES) may be underdiagnosed complicating the assessment of postsurgical seizures' outcome and the clinical management. We conducted a survey to investigate the current practices in the European epilepsy monitoring units (EMUs) and the data that EMUs could provide to retrospectively detect cases with postoperative PNES and to assess the feasibility of a subsequent postoperative PNES research project for cases with postoperative PNES. METHODS: We developed and distributed a questionnaire survey to 57 EMUs. Questions addressed the number of patients undergoing epilepsy surgery, the performance of systematic preoperative and postoperative psychiatric evaluation, the recording of sexual or other abuse, the follow-up period of patients undergoing epilepsy surgery, the performance of video-electroencephalogram (EEG) and postoperative psychiatric assessment in suspected postoperative cases with PNES, the existence of electronic databases to allow extraction of cases with postoperative PNES, the data that these bases could provide, and EMUs' interest to participate in a retrospective postoperative PNES project. RESULTS: Twenty EMUs completed the questionnaire sheet. The number of patients operated every year/per center is 26.7 ( ±â€¯19.1), and systematic preoperative and postoperative psychiatric evaluation is performed in 75% and 50% of the EMUs accordingly. Sexual or other abuse is systematically recorded in one-third of the centers, and the mean follow-up period after epilepsy surgery is 10.5 ±â€¯7.5 years. In suspected postoperative PNES, video-EEG is performed in 85% and psychiatric assessment in 95% of the centers. An electronic database to allow extraction of patients with PNES after epilepsy surgery is used in 75% of the EMUs, and all EMUs that sent the sheet completed expressed their interest to participate in a retrospective postoperative PNES project. CONCLUSION: Postoperative PNES is an underestimated and not well-studied entity. This is a European survey to assess the type of data that the EMUs surgical cohorts could provide to retrospectively detect postoperative PNES. In cases with suspected PNES, most EMUs perform video-EEG and psychiatric assessment, and most EMUs use an electronic database to allow extraction of patients developing PNES.

Assisted reproductive treatment in women with epilepsy. / Assistert befruktning blant kvinner med epilepsi.

BACKGROUND: Women with epilepsy give birth to fewer children than women without epilepsy. We wished to compare the use of assisted reproductive technology in Norwegian women who have epilepsy with Norwegian women in general. MATERIAL AND METHOD: In an international prospective registry study, the purpose of which was to identify the teratogenic effects of antiepileptic drugs, we included a total of 1510 births among Norwegian women who have epilepsy in the period 2000-2017. The women were recruited from 18 hospital neurological departments, and a protocol was completed for each pregnancy with demographic and clinical data. The use of assisted fertility among Norwegian women in general in the same period was retrieved from the medical birth registry. RESULTS: In women with epilepsy, altogether 96 of 1510 births (6.4 %) were a result of assisted reproductive technology, whereas the corresponding figure in the general population in the same period was 285 474 of 1 052 901 (2.7 %) (p<0.001). Among women with epilepsy, the proportion who used carbamazepine in pregnancy was significantly higher among those who conceived using assisted reproductive technology than among those who had become pregnant in the regular manner (p=0.02). INTERPRETATION: Compared to healthy Norwegian women, the use of assisted reproductive technology was more than twice as high among women with epilepsy. This may be an intimation of reduced fertility among these women.

Nonadherence to treatment regimens in epilepsy from the patient's perspective and predisposing factors: Differences between intentional and unintentional lack of adherence.

Nonadherence to recommended antiepileptic drug (AED) treatment regimens can result in seizure relapse with increased health risks. Nonadherence can be unintentional (eg, patients forget to take a dose), or intentional, when patients consciously decide not to follow the agreed AED treatment regimen. We aimed to determine the extent to which Norwegian patients with epilepsy (PWEs) report taking their AED differently from prescribed, either intentionally or unintentionally, and to identify risk factors for either form of nonadherence. Of 1182 PWEs who completed an online survey presented on the website of the Norwegian Epilepsy Association, 40% reported that they sometimes or often forget to take their AED as scheduled, and about 30% reported that they consciously chose not to follow the AED treatment plan agreed upon with their physician. Independent variables significantly associated with unintentional nonadherence include the following: feeling depressed, being younger than the mean age, and having memory problems. Independent factors significantly associated with intentional nonadherence include the following: feeling depressed, male gender, and perceptions of stigmatization. To improve the treatment of PWEs, it is important to distinguish between intentional and unintentional nonadherence to AED treatment regimens, as different risk factors and reasons associated with nonadherence to AED treatment regimens might require different interventions.

Sexual function in people with epilepsy: Similarities and differences with the general population.

OBJECTIVE: The potential impact of epilepsy on sexual function is important for patient welfare, but often neglected. This study explored the occurrences of different sexual problems in patients with both well-controlled and mostly refractory epilepsy, and compared these with equivalent information from the general population. METHODS: Between 2015 and 2017, a total of 221 adult inpatients and outpatients, mostly with intractable epilepsy, at the National Centre for Epilepsy in Norway, and 78 outpatients with well-controlled epilepsy at Lillehammer hospital participated in a questionnaire survey on sexual function. Information on the individual patient's epilepsy was collected. The results were compared with equivalent data on sexual function from 1671 adult Norwegians in the general population. RESULTS: Patients with epilepsy reported a significantly higher frequency of problems with orgasm, dyspareunia, erectile dysfunction, and feelings of sexual deviance. However, reduced sexual desire, premature ejaculation/climax, and vaginal dryness occurred at similar frequencies in the general population. After controlling for gender, we found no significant association between sexual problems and seizure control or use of enzyme-inducing antiepileptic drugs. In both genders, feelings of sexual deviance were associated with lower quality of life. Fewer patients with epilepsy were satisfied with their sex lives. The perception of sex as an important part of daily life was similar among women with epilepsy and women from the general population, whereas significantly fewer men with epilepsy than men in the general population reported that sex was an important part of their daily lives. Women with mostly refractory epilepsy reported asking for help with their sexual problems significantly more often than women in the other groups. SIGNIFICANCE: Some sexual problems occur significantly more often in patients with epilepsy than in the general population and feelings of sexual deviancy occur more frequently. No epilepsy-related factors could be identified as specific predictors.

Challenges in epilepsy-The perspective of Norwegian epilepsy patients.

OBJECTIVES: For most people with epilepsy (PWE), problems that are not directly related to seizures may constitute major challenges in everyday life. The purpose of this study was to determine the extent of these challenges and any risk factors for their occurrence among PWE in Norway, based on the patients' own perspective. MATERIALS AND METHODS: We used a web-based survey to ask PWE visiting the homepage of the Norwegian Epilepsy Association about different everyday challenges. A link to the survey was accessible via the members' homepage for a 4-month period during 2017. RESULTS: One thousand one hundred eighty-two PWE responded to the questionnaire. Although more than 40% of the cohort reported that they had been seizure free for at least 1 year, the majority reported that tiredness (71%), memory problems (70%), concentration problems (68%), headache or vertigo (51%), and feeling depressed (59%) continued to represent challenges. In addition, fear of being alone, sexual problems or difficulties in social settings were reported by about one-third of the patients. Reporting having these challenges was significantly associated with female gender, polytherapy, experiencing seizures during the previous 12 months and feeling blue or depressed. CONCLUSIONS: The results of this study, reflecting a self-selected Norwegian population, provide insights into the challenges not directly associated with seizures that impact on the quality of life of PWE. The impacts of such challenges may be underestimated as components of the entire burden of epilepsy.

People with epilepsy and their relatives want more information about risks of injuries and premature death.

For most people with chronic diseases such as epilepsy, thorough knowledge of the disease is important in order to reduce feelings of insecurity and to enable better management of everyday life. Whether and when to inform patients and their families about all the risks associated with epilepsy is a matter of controversy. Using a web-based survey, patients with epilepsy (PWE) (n=1183) and carers, family members, or guardians of PWE, who could either answer on behalf of the patients (CBP) (n=676) or on their own behalf (CAR) (n=231) were asked whether they wanted information about the risk of epilepsy-related injuries and premature death and also whether they had received such information. Ninety percent or more of PWE, CBP, and CAR reported that they wanted such information, and 50% of CAR, 81% of CBP, and 70% of PWE had received some information about seizure-related injuries. Regarding risk of unexpected death, 31% of PWE, 35% of CBP, and 28% of CAR had received information on this issue. Those with tonic-clonic seizures were most eager to obtain information on these matters, and those best informed about epilepsy-related risks were males and the youngest part of the cohort. The wish for more information or the likelihood of having already received information was independent of the individual's seizure situation. This study demonstrates that there is a considerable gap between what the patients want regarding information and what they are actually given by healthcare providers.

Pharmacokinetic variability of valproate in women of childbearing age.

The purpose was to investigate pharmacokinetic variability of valproic acid (VPA) in women of childbearing age by therapeutic drug monitoring (TDM) data to elucidate the variable relationship between dose and serum concentrations with the ultimate aim of facilitating safer use of VPA. Anonymized retrospective data from the TDM database (2006-2015) at the National Center for Epilepsy in Norway were used. Trough total concentrations of VPA at assumed steady state in women aged 14-46 years were analyzed. Data from 643 nonpregnant women of childbearing age (mean age = 27 years) were included. Mean dose and serum concentration of VPA were 968 (standard deviation [SD] = 453) mg/day and 411 (SD = 138) µmol/L, respectively, and 59% used polytherapy. The pharmacokinetic variability in serum concentration/dose (C/D) ratios between women was extensive. For doses <700 mg/day (n = 202; 32%; 150-625 mg/day), mean serum concentration was 336 µmol/L and variability in C/D ratio was 10-fold. The variability decreased with increasing dose to eightfold (≥700 to <1,500 mg/day, n = 358) and fourfold (≥1,500 mg/day, n = 96). This study demonstrates the extensive pharmacokinetic variability of VPA among women of childbearing age, which is most pronounced at low doses. In future studies, serum concentrations of VPA, rather than dosage, should be used as a guide for exposure of VPA and possible risks of teratogenicity to evaluate safety aspects of VPA in women.