Needs-based epilepsy follow-up
Needs-based epilepsy follow-up for adults (>18 years of age) was established by EpilepsiNett in Norway, at Drammen Hospital (Vestre Viken Hospital Trust), December 2019. The idea was picked up from Denmark, where a similar type of follw-up had been established for several different pajent trajectories. EpilepsiNett has established a Norwegian national standard for needs-based epilepsy follow-up which has spread across all of Norway. By 2025, 17 Norwegian hospitals are enrolled in the National forum for needs-based follow-up.
PRO-EPI questionnaire
EpilepsiNett has designed a patient reported outcome measures (PROMs) questionnaire called Patient Reported Outcomes in Epilepsy (PRO-EPI). PRO-EPI consists of 23 questions and five subjects: introduction, seizures, medication, living with epilepsy, and appointment. EpilepsiNett's reference network, and user panels including patients, their family, and health care personell were closely involved in the process when designing PRO-EPI 1.0. The questionnaire has been revised three times and was released in its 4th version in 2024. Consensus on the 4th version was obtained across the 17 hospitals enrolled in the National forum for needs-based epilepsy follow-up, following a workshop discussing the revisions at the annual meeting of the Norwegian chapter of the International League Against Epilepsy (ILAE) in June 2024. PRO-EPI 4.0 is available below, free of charge.
Organizing needs-based epilepsy follow-up
Patients receive a link to PRO-EPI on their smartphone twice yearly. An algorithm codes the incoming response as green, yellow or red. The epilepsy nurse is responsible for follow-up of incoming responses. A green response means that all is stable, and there is no need for follow-up at the moment. If a response is yellow, the epilepsy nurse looks into the patient's medical record and previous PRO-EPI responses and contacts the patient by phone if needed. For yellow responses, the epilepsy nurse consults the responsible medical doctor if needed. For red responses, the epilepsy nurse must inform the responsible medical doctor. If there are issues not solvable by telephone by either the epilepsy nurse or the medical doctor, the patient is offered an appointment at the outpatient clinic of neurology. Needs-based follow-up of does not replace such appointments, but ensures that appointments are based on the patient's current needs and have a clear agenda each time.
Safety
In the "appointment" section of PRO-EPI, patients are asked whether they would like to be contacted by the outpatient clinic of neurology at the moment. If the response is yes, the epilepsy nurse contacts the patient by phone. If there is information in the PRO-EPI response giving rise to concern, the epilepsy nurse contacts the patient even if the patient has not stated that there is a need to be contacted right now. Apart from the two yearly PRO-EPI responses, the patients can get in touch with the epilepsy nurse any time, by sending a text message.
Experience
The experiences from patients, clinicians and epilepsy nurses across Norway are positive so far, according to the dialogue at the regular digital meetings of the Forum for needs-based epilepsy follow-up. The feedback from patients is that they feel safe, included in decisions and well-informed, and that it is easier to get in touch with specialist care. Nurses and clinicians report that they work efficiently with more targeted, flexible, and personalized care.
Effects
Two PhD-projects are currently ongoing to investigate the objective effects of needs-based epilepsy follow-up in Norway, one focusing on the economical aspects, and one focusing on clinical aspects. Both projects started in 2023 and are a part of EpilepsiNett's research group.