Anna Edelvik Tranberg

Background We investigated all-cause and epilepsy-related mortality in patients operated with resective epilepsy surgery and in non-operated patients with drug-resistant epilepsy. Our hypothesis was that patients who proceed to surgery have lower mortality over time compared with non-operated patients. Method Data from 1329 adults and children from the Swedish National Epilepsy Surgery Register and 666 patients with drug-resistant epilepsy who had undergone presurgical work-up but not been operated were analysed. The operated patients had follow-ups between 2 and 20 years. We used the Swedish Cause of Death Register to identify deaths. Autopsy reports were collected for patients with suspected sudden unexpected death in epilepsy (SUDEP). Kaplan-Meier and Cox regression analyses were performed to identify predictors for mortality and SUDEP. Results SUDEP accounted for 30% of all deaths. Surgery was associated with lower all-cause mortality (HR 0.7, 95% CI 0.5 to 0.9), also when adjusted for age, sex and tonic–clonic seizures at inclusion. The benefit of surgery seemed to persist and possibly even increase after 15 years of follow-up. Risk factors of mortality for operated patients were persisting seizures and living alone. Of the operated patients, 37% had seizures, and these had a higher risk of mortality (HR 2.1, 95% CI 1.4 to 3.0) and SUDEP (HR 3.5, 95% CI 1.7 to 7.3) compared with patients with seizure freedom at last follow-up. Conclusions In this large population-based epilepsy surgery cohort, operated patients had a lower all-cause mortality compared with non-operated patients with drug-resistant epilepsy. Seizure freedom was the most important beneficial factor for both all-cause mortality and SUDEP among operated patients.

Objective Information to women with epilepsy on pregnancy‐related antiseizure medication (ASM) issues and reliable tools for therapeutic drug monitoring (TDM) are important aspects of epilepsy care. We aimed to develop and test an online tool for patient education on pregnancy‐related issues and communication with epilepsy nurses during pregnancy for women with epilepsy. Methods An existing national platform for online communication (1177.se) was used, and an online tool was developed by two epilepsy nurses, two neurologists, and an IT technician. The tool was launched as a complement to standard care, and patients deciding to use it were invited to participate in a survey of user experiences and knowledge questions. Results The online tool consists of two modules: one for patient education and one for TDM during pregnancy. The latter module allows scheduling of automatic reminders of blood tests that are sent to patients at set intervals. The epilepsy nurse can communicate results and suggested dose changes in the tool. A total of 48 women answered the survey: 28 had been invited to use the information module and 20 to use the TDM module. Patient experiences were generally good, and most users of the TDM module would prefer an online means of communication in future pregnancies. For epilepsy nurses, the tool provided good overview of patients currently pregnant and administrative advantages compared with traditional means of communication. Significance Online patient education and communication about TDM during pregnancy are feasible and can be a valuable part of future digitalization efforts in epilepsy care.

Objective: The objective of this study was to assess the value of prehospital measurement of lactate level in blood for diagnosis of seizures in cases of transient loss of consciousness.Methods: Between March 2018 and September 2019, prehospital lactate was measured with a point‐of‐care device by the emergency medical services in an area serving a population of 900 000. A total of 383 cases of transient loss of consciousness were identified and categorized as tonic‐clonic seizure (TCS), other seizure, syncope, or other cause, according to the final diagnosis in the electronic medical records system. Receiver operating characteristic curve analyses were used to identify the optimal lactate cut‐off.Results: A total of 383 cases were included (135 TCS, 42 other seizure, 163 syncope, and 43 other causes). The median lactate level in TCS was 7.0 mmol/L, compared to a median of 2.0 mmol/L in all other cases (P < .001). The area under the curve (AUC) of TCS vs nonepileptic causes was 0.87 (95% confidence interval [CI] 0.83‐0.91). The optimal cut‐off (Youden index, 67.8%) was 4.75 mmol/L, with 79% sensitivity (95% CI 71‐85) and 89% specificity (95% CI 85‐93) for TCS.Significance: Prehospital lactate can be a valuable tool for identifying seizures in transient loss of consciousness. For acceptable specificity, a higher cut‐off than that previously demonstrated for hospital‐based measurements must be used when values obtained close to the time of the event are interpreted.

BACKGROUND: Increased seizure frequency and new-onset tonic-clonic seizures (TCS) have been reported after epilepsy surgery. OBJECTIVE: To analyze potential risk factors for these outcomes in a large cohort. METHODS: We studied prospectively collected data in the Swedish National Epilepsy Surgery Register on increased seizure frequency and new-onset TCS after epilepsy surgery 1990-2015. RESULTS: Two-year seizure outcome was available for 1407 procedures, and data on seizure types for 1372. Increased seizure frequency at follow-up compared to baseline occurred in 56 cases (4.0%) and new-onset TCS in 53 (3.9%; 6.6% of the patients without preoperative TCS). Increased frequency was more common in reoperations compared to first surgeries (7.9% vs 3.1%; P = .001) and so too for new-onset TCS (6.7% vs 3.2%; P = .017). For first surgeries, binary logistic regression was used to analyze predictors for each outcome. In univariable analysis, significant predictors for increased seizure frequency were lower age of onset, lower age at surgery, shorter epilepsy duration, preoperative neurological deficit, intellectual disability, high preoperative seizure frequency, and extratemporal procedures. For new-onset TCS, significant predictors were preoperative deficit, intellectual disability, and nonresective procedures. In multivariable analysis, independent predictors for increased seizure frequency were lower age at surgery (odds ratio (OR) 0.70 per increasing 10-yr interval, 95% CI 0.53-0.93), type of surgery (OR 0.42 for temporal lobe resections compared to other procedures, 95% CI 0.19-0.92), and for new-onset TCS preoperative neurological deficit (OR 2.57, 95% CI 1.32-5.01). CONCLUSION: Seizure worsening is rare but should be discussed when counseling patients. The identified risk factors may assist informed decision-making before surgery.

Summary: Objective: To evaluate health‐related quality of life (HRQOL) and emotional well‐being in resective epilepsy surgery and nonoperated patients at long‐term follow‐up.Methods: This is a prospective cohort study where patients undergoing presurgical work‐up during 1995–1998 completed the Short‐Form Health Survey (SF‐36) and the Hospital Anxiety and Depression scale (HAD) at baseline, and 2 and 14 years after resective surgery or presurgical evaluation (nonoperated patients). SF‐36 scores were compared to a normative population. Proportions of patients reaching HRQOL changes of minimum clinically important difference (MCID) were calculated.Results: At 14‐year follow‐up, operated patients scored equal to or better than the normative sample on all SF‐36 domains except Social Functioning and Mental Health. Physical component summary (PCS) was better and mental component summary (MCS) was worse than for the normative sample. Nonoperated patients scored worse than the normative sample on five of eight domains, and on PCS and MCS. Change in seizure status from 2 to 14 years did not affect PCS or MCS means. Improvement reaching MCID from baseline to long‐term was seen in 50% (PCS) and 47% (MCS) of operated and in 33% (PCS) and 38% (MCS) of nonoperated patients. Worsening was seen in 18% (PCS) and 22% (MCS) of operated and in 38% (PCS) and 38% (MCS) of nonoperated patients. Differences between groups were nonsignificant.HAD scores did not differ between groups, and the numbers of possible or probable cases were low. Patient satisfaction with surgery was higher in operated seizure‐free patients. Only 5% of all operated patients considered surgery not to be overall beneficial.Significance: At the group level, HRQOL was stable 14 years after surgery compared to after 2 years. Social Functioning and Mental Health were still below, but other domains were similar to the normative sample. Individual patterns did not follow seizure outcome changes, indicating that multiple factors are important for long‐term HRQOL.

Objective: To investigate long-term employment outcomes after resective epilepsy surgery in a national population-based cohort of adults. Methods: In the Swedish National Epilepsy Surgery Register, all adults who were operated with resective epilepsy surgery from 1995 to 2010 were identified. Two-year follow-up was available for 473/496, 5-year follow-up for 220/240, 10-year follow-up for 240/278, and 15-year follow-up for 85/109 patients. Results: There were no significant changes in employment outcome over time at group level, but for those with full-time employment at baseline, 79%, 79%, 57%, and 47% of seizure-free patients were in full-time work at 2-, 5-, 10-, and 15-year follow-up, compared to patients with benefits at baseline, where 16%, 27%, 31%, and 33% of seizure-free patients worked full time at these time points (p = 0.018 at 10 years). More patients with full-time work had ability to drive, a family of their own, and higher educational status than patients in part-time work or on benefits. Univariate predictors for employment at long term were having employment preoperatively, higher education, favorable seizure outcome, male sex, and younger age at surgery. Multivariate predictors were having employment preoperatively, favorable seizure outcome, and younger age. Conclusions: The best vocational outcomes occurred in seizure-free patients who were employed or students at baseline, which may reflect a higher general psychosocial level of function. Younger age also predicted better employment outcomes and it therefore seems plausible that early referral for surgery could contribute to better vocational outcomes.