Survey of an online system for information to women with epilepsy of childbearing age and management during pregnancy: A 3-year evaluation.

OBJECTIVE: We developed an online tool for women with epilepsy consisting of two modules: one with information on pregnancy-related issues (information module) and one for reminders about blood test and communication about dose changes (pregnancy module). Our aim was to assess perceived value, user-friendliness and improvement of patient knowledge in users. METHODS: The system was launched in 2019 and patients invited by epilepsy nurses were asked to participate in a survey 1 month after the invitation for the information module, and 1 month postnatally for the pregnancy module. RESULTS: By November 2022, the system had been used by 96 individuals out of 100 invited in the pregnancy module, in a total of 114 pregnancies. One hundred and eleven women had been invited to the information module, and 70 of these accessed it. The survey received 96 answers (44 information, 52 pregnancy). User-friendliness was rated as good or very good by a little over half of the users; 55% in the information module and 52% in the pregnancy module. Among pregnant women, 83% found the TDM part useful and most would prefer a similar system in future pregnancies. Sixty-four percent of users of the information module and 48% of the pregnancy module found that the system had increased their knowledge. Two knowledge questions were answered correctly by a significantly higher proportion of those that had accessed the online information. SIGNIFICANCE: There was great demand for online communication during pregnancy and our experiences of implementation can hopefully assist digitalization of epilepsy care elsewhere. Online information also seems to increase knowledge about pregnancy-related issues, but our invitation-only method of inclusion was not effective for widespread dissemination. Patient-initiated access with optional epilepsy-team contact if questions arise could be an alternative. PLAIN LANGUAGE SUMMARY: We have performed a survey of users of a new Internet-based tool for information to women of childbearing age and communication about dose changes during pregnancy. Users were overall satisfied with the tool and answered some knowledge questions more accurately after accessing the information.

Randomized controlled trial of moderate cardiovascular exercise for patients with drug-resistant epilepsy.

OBJECTIVE: The primary research question of this study was whether a moderate cardiovascular exercise program can reduce seizure frequency in patients with focal drug-resistant epilepsy (DRE). The hypothesis is that cardiovascular fitness will reduce seizure frequency in persons with epilepsy (PWE). METHODS: Twenty-eight patients were randomized into two groups; exercise or relaxation. The exercise group were given an ergometric bicycle sent to their home to be used for 150 min/week, 30 min/day for 5 days a week for the study period of 6 months. Participants in the relaxation group were given audio muscular relaxation exercises to be performed for 20 min at least five times per week for the study period of 6 months. Seizure counts and exercise/relaxation sessions were registered daily in a written diary. Both groups received monthly motivational telephone calls. Seizures, anxiety, and depression symptom ratings (Hospital Anxiety and Depression Scale (HADS)), health status ratings (RAND-36), aerobic capacity (estimated VO2max), self-efficacy for exercise (SEE), level of physical activity, and adverse events were measured at the baseline and after the 6 months of intervention. CONSORT guidelines were followed. RESULTS: Twenty-two patients completed the intervention. There were no significant changes in seizure frequency in either of the groups. Six months of moderate exercise did increase the level of physical activity and maximal oxygen uptake. SIGNIFICANCE: Moderate exercise did not affect seizure frequency in this study. The patients in the exercise group did increase their estimated VO2max, which is an important indicator for health, without deterioration of seizure frequency. This was accomplished with only minimal support from a physiotherapist every month. To exercise at home at a moderate intensity level with regular support may therefore be an option for patients with epilepsy. The patients in the exercise group increased their level of physical activity significantly, which indicates that they were compliant to the treatment.

An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study.

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.

The provision of epilepsy care across Europe 2017: A 17-year follow-up survey.

OBJECTIVE: To assess the resources available in the provision of epilepsy care across Europe and the developments since the International League Against Epilepsy (ILAE) survey published in 2003 (data collected in 2000). METHODS: An updated online version of the European Epilepsy Services Inventory was distributed to all European chapters of the ILAE (N = 47) and responses were obtained from 33 chapters (response rate 70%). To assess trends and allow comparisons with the survey published in 2003, the responding countries were divided into 4 groups (Western, Central, Southern, and Eastern). Responses from European Union (EU) member states are reported as a subgroup (N = 23), since the current survey is a part of the EU-funded European Study on the Burden and Care of Epilepsy (ESBACE, www.esbace.eu). RESULTS: The total number of physicians involved in epilepsy care had increased since 2000, with the largest increase seen for neurologists. The gap between the best- and the least-provided areas with regard to the competence of the providers had diminished. However, the density of comprehensive multidisciplinary epilepsy teams had not changed to any greater degree. The main problems reported by the chapters were to a large extent the same as in 2000 and included lack of specialists and specialist care, lack or underuse of epilepsy surgery, and problems regarding financing and resource allocation. Several chapters also highlighted problems with healthcare structure and organization. SIGNIFICANCE: Although there have been some improvements concerning the availability of care for people with epilepsy in Europe over the last 17 years, there are still a number of problem areas with little improvement or where there are important regional differences.