Sudden unexpected death in epilepsy (SUDEP) is a challenging issue for neurologists and many remain uncertain about if and when to discuss this with patients. Some advocacy groups have campaigned for early discussion of SUDEP after diagnosis in all, and the importance of such a discussion is emphasised in national guidelines. However, robust data to support this approach is lacking, and little is known of any negative impact of such discussions. We highlight an adverse outcome from early discussion of SUDEP in one patient.
Case description
A 37 year old female presented following two unprovoked generalised tonic–clonic seizures within 3 weeks. She had a previous diagnosis of idiopathic generalised epilepsy in childhood, but treatment had been discontinued at the age of 8 and she had remained seizure free for many years. She had no psychiatric history. A diagnosis of recurrent epilepsy was made, investigations arranged and Levetiracetam commenced. The risk of SUDEP was discussed during the initial consultation. Subsequently, standard EEG and MRI head were normal. A month later, on Levetiracetam 1.5g daily, she reported frequent, new attacks which were different to the tonic–clonic seizures with which she had presented. These attacks were associated with features of panic and dissociation, suggestive of psychogenic non–epileptic attacks. It transpired that the patient and her family had become extremely worried after they were told about SUDEP and believed that she was ‘living on borrowed time’. The patient had been under supervision by family members continuously since the first consultation, her husband giving up his job to facilitate this. She was admitted for videotelemetry which confirmed the new attacks were non–epileptic. After an explanation of the nature of the attacks, and reassurance about the low risk of SUDEP, the attacks improved.
Discussion
To date, the mechanism of SUDEP remains largely unknown and evidence–based preventative measures are lacking. The frequency of generalised tonic–clonic seizures appears to be the dominant risk factor, and it has been suggested that early discussion of SUDEP may encourage adherence to treatment, thus reducing seizure frequency and hence the risk of SUDEP. However, it seems likely that such discussions may have negative psycho–social effects in some individuals, such as our patient. It is important to consider the timing, nature and content of such discussions, and to be sensitive to possible psycho–social harm that may result from them. More detailed studies of the impact of early SUDEP discussion are required.
Purpose This systematic review of epilepsy mortality systematic reviews evaluates comparative risks, causes, and risk factors for all-cause mortality in people with epilepsy (PWE) to specifically establish the burden of epilepsy-related deaths. Method MEDLINE and Embase were searched from conception to 26/12/2018 for systematic reviews evaluating all-cause mortality in PWE of any age. Two authors performed independent study selection, data extraction and quality assessment. Deaths were separated into epilepsy-related and unrelated using a recently published classification system. Outcomes included standardised mortality ratio (SMR) and mortality rate (MR) in a primary analysis of comparative risks, causes, and risk factors for all-cause and epilepsy-related mortality. A narrative synthesis of review findings was used to present results. Results Six moderate- or high-quality systematic reviews were included, evaluating 103 observational studies. All-cause mortality remained similarly high between 1950 and present (median SMR range 2.2–3.4). Africa had the highest SMR (median 5.4, range 2.6–7.2). SMRs were also higher for children < 18 years (median 7.5, range 3.1–22.4) than adults (median 2.6, range 1.3–8.7), and for epilepsy-related (median 3.8, range 0.0–82.4) than unrelated causes (median 1.7, range 0.7–17.6). Structural brain disease conferred the greatest risk for all-cause mortality (SMR range 24.0–41.5). Common epilepsy-related death causes included SUDEP, alcohol, drowning, pneumonia, and suicide. Conclusion Premature all-cause mortality remains a major problem in PWE globally, particularly in children and young adults, with most being epilepsy-related and potentially preventable. mbizvogkm@gmail.com
Summary: Valproate (VPA) is an effective, widely used antiepileptic drug. Unfortunately its use in pregnant women is associated with neural tube defects in the offspring. Although the etiology of neural tube defects is multifactorial, there is evidence that underlying genetic susceptibility plays a part. We describe two women taking moderate doses of VPA who repeatedly bore children with neural tube defects, despite folate supplementation. This suggests a pharmacogenetic susceptibility to the teratogenic effects of VPA.
Summary: Purpose: To study the effects of antiepileptic drugs (AEDs) on sex hormone levels and sexual activity in a group of men attending a hospital‐based epilepsy clinic. Methods: One hundred eighteen men being treated with AED therapy, 32 with epilepsy but not receiving AEDs, and 34 controls were recruited. All subjects were aged 18–65 years. Blood (20 ml) was removed for hormone assays, after which each subject completed a validated questionnaire [Sexuality Experience Scores (Frenken and Vennix, 1981)] aimed at exploring the individuals' sexual activity and attitudes to sexual morality. Results: Men taking carbamazepine (CBZ) only had significantly higher mean sex hormone‐binding globulin (SHBG) levels than the control group. The CBZ group also had a significantly lower mean DHEAS concentration than the control, untreated, and sodium valproate (VPA) monotherapy groups. The phenytoin monotherapy group (PHT) had a significantly higher mean SHBG than both the control and untreated groups, and had a significantly higher mean total testosterone (TT) value than the control untreated, CBZ, and VPA groups, and a significantly lower mean DHEAS than the controls, untreated, and VPA groups. Men receiving more than one AED had significantly higher mean SHBG concentrations compared with control, untreated, and VPA groups. In addition, the poly‐therapy group's mean TT was significantly higher than the control and VPA groups, although its mean DHEAS concentration was lower than the control, untreated, and VPA groups. There were no significant differences between the study groups in mean FT, Budrostenedione (AND), or estradiol levels. But the CBZ, PHT, and polytherapy groups had significantly lower mean free and rogen index (FAI) than the controls. The CBZ group had a lower mean FAI than the VPA group. The poly‐therapy group had a lower FAI than the untreated group. Sexuality Experience Scores (SES) showed that those men receiving AEDs embraced a stricter sexual morality than the controls and untreated, and expressed greater satisfaction with their marriages than the control and untreated groups. Conclusions : Seizure type did not affect SES scores. Multiple regression showed men who had received further education were less accepting of strict sexual morality.
Introduction In an increasingly digital age for healthcare around the world, administrative data have become rich and accessible tools for potentially identifying and monitoring population trends in diseases including epilepsy. However, it remains unclear (1) how accurate administrative data are at identifying epilepsy within a population and (2) the optimal algorithms needed for administrative data to correctly identify people with epilepsy within a population. To address this knowledge gap, we will conduct a novel systematic review of all identified studies validating administrative healthcare data in epilepsy identification. We provide here a protocol that will outline the methods and analyses planned for the systematic review. Methods and analysis The systematic review described in this protocol will be conducted to follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. MEDLINE and Embase will be searched for studies validating administrative data in epilepsy published from 1975 to current (01 June 2018). Included studies will validate the International Classification of Disease (ICD), Ninth Revision (ICD-9) onwards (ie, ICD-9 code 345 and ICD-10 codes G40–G41) as well as other non-ICD disease classification systems used, such as Read Codes in the UK. The primary outcome will be providing pooled estimates of accuracy for identifying epilepsy within the administrative databases validated using sensitivity, specificity, positive and negative predictive values, and area under the receiver operating characteristic curves. Heterogeneity will be assessed using the I 2 statistic and descriptive analyses used where this is present. The secondary outcome will be the optimal administrative data algorithms for correctly identifying epilepsy. These will be identified using multivariable logistic regression models. 95% confidence intervals will be quoted throughout. We will make an assessment of risk of bias, quality of evidence, and completeness of reporting for included studies. Ethics and dissemination Ethical approval is not required as primary data will not be collected. Results will be disseminated in peer-reviewed journals, conference presentations and in press releases. PROSPERO registration CRD42017081212.
Abstract Objective This study was undertaken to investigate the trends and mechanisms of epilepsy‐related deaths in Scotland, highlighting the proportion that were potentially avoidable. Methods This was a retrospective observational data‐linkage study of administrative data from 2009–2016. We linked nationwide data encompassing mortality records, hospital admissions, outpatient attendance, antiepileptic drug (AED) prescriptions, and regional primary care attendances. Adults (aged ≥16 years) suffering epilepsy‐related death were identified for study using International Classification of Diseases, 10th Revision coding combined with AED prescriptions. We reported epilepsy‐related mortality rate (MR), age‐specific mortality ratios, multiple cause‐of‐death frequencies, and the proportion of potentially avoidable deaths (identified as those with an underlying cause listed as avoidable by the Office for National Statistics). Results A total of 1921 epilepsy‐related deaths were identified across Scotland; 1185 (62%) decedents were hospitalized for seizures in the years leading up to death, yet only 518 (27%) were seen in a neurology clinic during the same period. MR remained unchanged over time, ranging from 5.9 to 8.7 per 100 000 Scottish population (95% confidence interval [CI] = −.05 to .66 per 100 000 for annual change in MR). Mortality ratios were significantly increased in young adults aged 16–54 years (2.3, 95% CI = 1.8–2.8), peaking at age 16–24 years (5.3, 95% CI = 1.8–8.8). Sudden unexpected death in epilepsy (SUDEP) constituted 30% of the 553 young adult epilepsy‐related deaths, with several other non‐SUDEP fatal mechanisms identified including aspiration pneumonia, cardiac arrest, AED or narcotic poisoning, drowning, and alcohol dependence. Seventy‐six percent of young adult epilepsy‐related deaths were potentially avoidable. Significance Epilepsy‐related deaths are a major public health problem in Scotland, given that they are not reducing, people are dying young, and many deaths are potentially avoidable. SUDEP is only one of several important mechanisms by which epilepsy‐related deaths are occurring in young adults. Services may need to be re‐evaluated to improve specialist referral following seizure‐related hospital admissions.
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