Patients' long-term perspectives on gains and losses after temporal lobe resection for epilepsy.

OBJECTIVE: To investigate long-term (>10 years) experiences and overall satisfaction with temporal lobe resections (TLB) for epilepsy. METHODS: Eligible participants were identified through the administrative epilepsy surgery registry at Oslo University Hospital. Data were collected through individual, semi-structured interviews with fifty participants. Interview records were analyzed using reflexive thematic analysis. RESULTS: Participants' answers were divided into two main themes: "looking back on surgery" and"considering gains and losses from surgery". Most participants expressed satisfaction with having undergone surgery. Nevertheless, postsurgical problems had been encountered, and presurgical hopes had only partly been fulfilled. They described memory and naming problems with a major impact on daily life. Further, they had thoughts about effects on employment, independence, and feelings of loneliness, and expressed a need for more and better preoperative information. CONCLUSIONS: Presurgical hopes go beyond seizure freedom and memory and naming problems are experienced lasting many years after surgery in the temporal lobe. Better preoperative information, particularly about unwanted cognitive effects, is of prime importance. By exploring patients presurgical hopes, a common ground for expectations on surgery may be found along with strategies on how to cope with cognitive difficulties and possible negative life changes.

Temporal lobe epilepsy. / Temporallappsepilepsi.

The temporal lobes are the part of the brain most likely to give rise to epileptic seizures. Seizures originating in the temporal lobes vary greatly in character; some may be so unusual that they are not even recognised as epileptic. For patients who have been diagnosed with hippocampal sclerosis and whose seizures cannot be controlled with drugs, epilepsy surgery may be a good treatment option. In this brief clinical review, we summarise the key features of epilepsy and highlight the importance of accurate and early diagnosis for achieving good clinical outcomes.

Seizure outcomes of temporal lobe epilepsy surgery in patients with normal MRI and without specific histopathology.

BACKGROUND: Seizure outcome following surgery in pharmacoresistant temporal lobe epilepsy patients with normal magnetic resonance imaging and normal or non-specific histopathology is not sufficiently presented in the literature. METHODS: In a retrospective design, we reviewed data of 263 patients who had undergone temporal lobe epilepsy surgery and identified 26 (9.9%) who met the inclusion criteria. Seizure outcomes were determined at 2-year follow-up. Potential predictors of Engel class I (satisfactory outcome) were identified by logistic regression analyses. RESULTS: Engel class I outcome was achieved in 61.5% of patients, 50% being completely seizure free (Engel class IA outcome). The strongest predictors of satisfactory outcome were typical ictal seizure semiology (p = 0.048) and localised ictal discharges on scalp EEG (p = 0.036). CONCLUSION: Surgery might be an effective treatment choice for the majority of these patients, although outcomes are less favourable than in patients with magnetic resonance imaging-defined lesional temporal lobe epilepsy. Typical ictal seizure semiology and localised ictal discharges on scalp EEG were predictors of Engel class I outcome.

Discontinuation of antiepileptic drugs in seizure-free patients - when and how? / Seponering av antiepileptika ved anfallsfrihet ­ når og hvordan?

In seizure-free patients with epilepsy, the question of whether, and if so when, it is acceptable to withdraw treatment may be difficult to answer. A thorough risk-benefit assessment should be undertaken with the patient and next of kin, during which the consequences of a relapse must be weighed against the disadvantages of continued administration of the drug. As a main rule, adult patients should have been seizure-free for at least two years before discontinuation is considered. In children with epilepsy with a known good prognosis, discontinuation may be considered even earlier.

Sleep problems in children and adolescents with epilepsy: Associations with psychiatric comorbidity.

Sleep problems are common in pediatric epilepsy and may influence seizure control, daytime functioning, and overall quality of life. Knowledge of factors contributing to sleep problems is likely to improve treatment. The aim of this study was to investigate associations between psychiatric comorbidity and parent-reported and self-reported sleep problems in a sample of children and adolescents with epilepsy. Participants were children and adolescents (N=94), aged 10-19years, with generalized or focal epilepsy who had been referred to a tertiary epilepsy treatment center in Norway. Participants underwent a thorough clinical assessment and 24h of EEG registration. Information on sleep problems was obtained from parents using the Children's Sleep Habit Questionnaire (CSHQ) and from self-reporting using the Sleep Self-Report (SSR) questionnaire. Psychiatric diagnoses were established using the semistructured psychiatric interview Schedule for Affective Disorders and Schizophrenia - Present and Lifetime Version (Kiddie-SADS-PL). Both the total and subdomain CSHQ and SSR scores were high in comparison with scores from population-based samples. Having one or more psychiatric disorder(s) was significantly associated with elevated scores on both the CSHQ and the SSR. With the exception of parent-reported parasomnias, associations between sleep problems and psychiatric disorders remained significant after adjusting for relevant epilepsy variables. Psychiatric comorbidity explained about one-third of the variance of the reported sleep problems in children and adolescents with epilepsy.

Psychiatric comorbidity in children and youth with epilepsy: An association with executive dysfunction?

OBJECTIVES: Psychopathology in children and youth with epilepsy has previously been related to executive dysfunction, but the nature of the association is uncertain. We sought to explore risk factors for psychiatric disorders in children and youth with epilepsy, with emphasis on executive dysfunction, along with seizure-related and psychosocial factors. METHODS: The cohort consisted of one hundred and one consecutive patients aged 10-19 years with focal (n=52) or genetic generalized (n=49) epilepsy. All were screened for psychiatric symptoms, using part of an extensive questionnaire, the Strengths and Difficulties Questionnaire (SDQ) for both patients and their parents. Participants scoring in the borderline or abnormal range on the SDQ received a psychiatric interview (Kiddie-SADS-PL). All participants underwent a neuropsychological examination, and those with general cognitive abilities (IQ)<70 were excluded. RESULTS: Forty-seven of 101 participants (46.5%) had a SDQ score in the borderline or abnormal range and underwent a psychiatric evaluation. Of these, 44 (93.6%) met the criteria for a psychiatric diagnosis, the most common being ADHD and anxiety. An executive deficit was identified in 26.8% of the participants with a psychiatric diagnosis, but in only 5.4% of those without such a diagnosis (p=0.003). Multivariate logistic regression analysis showed that executive dysfunction was an independent risk factor for having a psychiatric disorder (OR 8.2, CI 1.8-37.2, p=0.006), along with male gender (OR 2.9, CI 1.2-7.3, p=0.02), and early seizure onset (0.86-that is one year older equals risk of psychiatric disorder reduced by 14%-CI 0.77-0.96, p=0.01). Other epilepsy-related or psychosocial factors were not significantly associated with psychiatric disorders. CONCLUSIONS: Multiple factors are associated with psychiatric problems in children and youth with epilepsy. In this study, executive dysfunction, male gender, and early epilepsy onset were independent risk factors for having a psychiatric disorder. An evaluation of psychiatric and cognitive problems is important to enable a positive long-term outcome in childhood epilepsy.

Early sexual debut in Norwegian youth with epilepsy: A population-based study.

OBJECTIVES: In comparison with controls, youth with epilepsy (YWE) have greater psychosocial problems. However, information about their sexual behavior is sparse. We have performed a large, population-based questionnaire study to examine differences in sexual behavior between YWE and controls. METHODS: A randomly chosen cohort of youth (13-19 years) from Akershus county, Norway (n=19,995) was asked to complete a questionnaire anonymously with questions on epilepsy and sexual activity. RESULTS: The response rate was 85%. Two hundred forty-seven participants reported having or having had epilepsy, i.e., a lifetime epilepsy prevalence of 1.2%. Compared with controls, a higher proportion of YWE reported having had sexual intercourse (43.6% vs. 35.3%, p=0.009). The mean age at sexual debut was significantly lower in YWE than in controls (14.0 years vs. 15.0 years, p<0.001), and this was particularly marked among boys. A higher proportion of YWE reported not having used contraceptives at their last sexual intercourse compared with controls (31.6% vs. 22.3%, p=0.03). Ten percent of YWE, compared with 2% of the controls, reported that they had been forced into their first sexual intercourse. CONCLUSION: In YWE, some aspects of sexual behavior differ from those of their peers, with earlier sexual debut and less frequent use of contraceptives. More attention should be directed toward this subject, aiming at avoiding unwanted pregnancies and potential emotional traumas in this already vulnerable patient group.

[Long-term adverse effects of anti-epileptic drugs]. / Langtidsbivirkninger av antiepileptika.

Around 120,000 patients in Norway use anti-epileptic drugs daily. Their use has increased in recent years, partly because these drugs are also used for psychiatric disorders, migraine and neuropathic pain. Treatment usually lasts for many years. It is important for doctors to familiarise themselves with the adverse effect profile of these drugs, especially because the long-term adverse effects are generally insidious and are easy for both doctor and patient to overlook.

Use of screening tools to assess comorbidities and adverse events in patients with epilepsy. A European Reference Network for Rare and Complex Epilepsies (EpiCARE) survey.

PURPOSE: As comorbidities can affect treatment decisions, quality of life, and prognosis in epilepsy, it is important that they are detected and addressed as soon as possible. Screening tools can help by rapidly assessing various additional challenges in epilepsy. METHODS: To map the use and perceived benefit of different screening instruments for quality of life, psychiatric comorbidity, and cognition, along with side effects from anti-seizure medication in Europe, we sent an online questionnaire to dedicated epilepsy centres departments within the European Reference Network for Rare and Complex Epilepsies (EpiCARE). RESULTS: Among the 40 hospitals in the EpiCARE network, we received responses from 25 (63%), with 28 individual respondents. Most respondents reported using screening for quality of life (86%) and psychiatric comorbidity (82%), but relatively few (14%) screen for sexual problems. Many (47) different tools were used for evaluation of cognitive dysfunction, but just a few (5) different tools were used to screen for adverse events. The optimization of individual patient care was one main reason given for using screening tools (58%-100% - depending on purpose of tool), another was research (50% - 88% - depending on purpose of tool). A major benefit of using screening tools perceived by the respondents is the detection of "hidden" comorbidity (67% - 90% - depending on purpose of tool). CONCLUSION: In the absence of a broad consensus regarding use of screening tools, practices vary considerably among epilepsy centres. Greater emphasis should be directed towards harmonizing use of screening tools. Future research should address how screening results influence treatment choices, and how these might affect clinical care.

Psychiatric symptoms in Norwegian children with epilepsy aged 8-13 years: effects of age and gender?

PURPOSE: In this population-based study we wanted to assess the prevalence and impact of psychiatric symptoms in children with epilepsy compared to controls, and investigate possible age and gender differences. METHODS: Data were collected using the Strengths and Difficulties Questionnaire-Parent report (SDQ-P) as part of a more extensive questionnaire. A total of 14,699 parents of children aged 8-13 years (response rate 78%) participated. Associations between SDQ scores and epilepsy, other chronic disease, age, gender, and socioeconomic factors were explored using logistic regression analysis. KEY FINDINGS: Children with epilepsy (CWE) (n=110) had a significantly higher frequency of psychiatric symptoms (37.8% vs. 17.0% in controls, p<0.001). Gender differences were found in several subscales of the SDQ; girls had more emotional problems, whereas boys had higher scores regarding peer relationship and hyperactivity/inattention problems. Male gender, low socioeconomic status (family income below poverty limit and living in a single parent home), and other chronic disease (asthma/diabetes) were independent risk factors of developing psychiatric symptoms, along with epilepsy. Having or having had epilepsy was, however, a much stronger risk factor for developing psychiatric symptoms in girls than in boys [odds ratio (OR) 4.2 vs. OR 2.3]. A minor effect of age was seen only in girls with epilepsy, with an increased risk of psychiatric symptoms in age group 10-13 years (OR 1.28 for scoring borderline/abnormal on SDQ-total difficulties). Borderline/abnormal impact scores were found in 31.8% of CWE compared with 13.0% of controls (p<0.001). SIGNIFICANCE: Multiple risk factors contribute to the high prevalence of psychiatric symptoms in CWE, perhaps differently in boys and girls. Awareness of this complex interaction may help target intervention toward high risk groups and thus prevent more serious problems from arising.

A call for better information about epilepsy: The patients' perspective-An online survey.

PURPOSE: For people with epilepsy (PWE), insufficient information and knowledge about the disease might have a negative influence on outcome and lead to poorer quality of life. In contrast, good information may increase empowerment and reduce stigma. This study investigated whether Norwegian PWE want information about different epilepsy-related issues, whether they actually obtain the information that they seek, and the extent to which they are satisfied with the information they receive. Furthermore, we examined which factors that might have influenced the degree of specific information given to PWE. METHODS: We invited PWE visiting the homepage of the Norwegian Epilepsy Association to complete a web-based questionnaire about their perspective on obtaining information about epilepsy-related issues. The survey was accessible for a four-month period during 2017. RESULTS: More than 90% of respondents (n = 1182) wished general information about epilepsy, and over 75% wanted information on more specific issues, like epilepsy surgery. Depending on the subject, the proportion of respondents that reported receiving the information they wished varied from 6.6% to 91.9%. Obtaining information about epilepsy surgery and neurostimulation was significantly associated with male gender. Having tonic-clonic seizures was associated with obtaining information about the diagnosis, an organized lifestyle, regular sleep, and consumption of alcohol. CONCLUSIONS: This study provides insights on how PWE experience provision of relevant information about epilepsy. Although most PWE considered that they obtained information on general epilepsy issues, most PWE interested in information on non-medical treatments and psychosocial issues reported that they did not obtain the information they wanted.

Tested and reported executive problems in children and youth epilepsy.

Objectives: Executive problems in children and youth with epilepsy influence their ability to handle important aspects of daily life activities. The present study sought to explore factors associated with executive problems for patients with epilepsy in this age group. Methods: The cohort consisted of 97 consecutive patients at the National Centre for Epilepsy in Norway, aged 10-19 years, with focal or genetic generalized epilepsy. All underwent tests of executive functions (D-KEFS), the Behavior Rating Inventory for Executive Function (BRIEF), and screening for psychiatric symptoms, using the Strengths and Difficulties Questionnaire (SDQ). Results: Parent-reported cognitive executive dysfunction (BRIEF, Metacognitive Index) was the strongest independent predictor for tested executive dysfunction and vice versa. Furthermore, male gender correlated strongest with parent-reported behavioral regulation problems (BRIEF, Behavioral Regulation Index) along with borderline/pathological score on the SDQ and parent-reported cognitive executive dysfunction. Conclusions: A strong association between parent-reported cognitive executive dysfunction and tested executive dysfunction was found. Male gender correlated strongest with parent-reported behavioral regulation problems. The latter was probably related to a higher frequency of symptoms associated with psychopathology among the boys than the girls. The frequency of executive deficits according to the different modes of measurement varied from 16% to 43%, suggesting that they capture different aspects of behavior under the executive umbrella.