Safety and feasibility of an intensive epilepsy nurse-based treatment course

PURPOSE To determine safety, feasibility and patient satisfaction of an epilepsy nurse-based treatment course with frequent contacts and changes of anti-epileptic treatment provided by supervised anti-epileptic drug (AED) prescribing epilepsy nurses. METHODS Regular prescheduled clinical contacts with a neurologist to adjust AED treatment were largely substituted by on-demand contacts with epilepsy nurses with the delegated right to adapt AED within predefined limits. To secure safety, electronic medical files of patients with 6 or more contacts with epilepsy nurses were retrospectively analysed for clinical characteristics, safety measures and seizure frequency before/after the intensive treatment course and patients were asked to complete a questionnaire about treatment satisfaction. RESULTS Between January 1st 2016 and 31st December 2018, 2721 patients were treated by epilepsy nurses (2561 ambulatory controls, 8690 phone contacts). 617 patients received an intensive treatment course (six or more contacts in the observation period, range: 6-65) with an average length of 24.3 months. The average number of AED tried was 3.4. In patients with ongoing seizures (n = 310), 165 (53.2 %) reported an improvement of seizure frequency by 50 % or more. Seizure frequency fell from 4.4 to 2.4 days with seizures/months (p < 0.001). The epilepsy-related hospitalization rate was 0.86/patient; 27 episodes with status epilepticus occurred in 21 patients, three hospitalizations were due to severe side effects. There were no fatal complications. No hospitalization was related to the intensive treatment course by prescribing epilepsy nurses. The overall patients' satisfaction was high. CONCLUSION Intensive epilepsy treatment facilitated by epilepsy nurses was safe and associated with high patient accept and improvement of seizure frequency.