PRISE: Predicting the number of seizures in people with epilepsy V.1
Research type
Research Study
Full title
PRISE: Predicting RIsk of future Seizures through Evidence-based decision making – Testing the clinical utility of an online seizure calculator (part of the wider PRISE study)
IRAS ID
343612
Contact name
Laura J Bonnett
Contact email
Sponsor organisation
Clinical Directorate, University of Liverpool
Duration of Study in the UK
0 years, 6 months, 29 days
Research summary
Research Summary
Seizures happen because of sudden bursts of electrical activity in the brain. People with two or more unprovoked seizures are usually diagnosed with epilepsy. As epilepsy varies so much between each person, it can be difficult to make decisions about best care.
An indication of how many seizures a person is predicted to have in a given timeframe could help patients and doctors to have conversations and make decisions about care. A prediction model can provide that guidance.
The PRISE project seeks to both design and assess the use of a prediction model for epilepsy clinicians to use when having a clinical consultation with people with epilepsy. The prediction model will be contained in a website and predict the number of seizures a person will have in a given timeframe. It can be thought of like a calculator. In order to best position the calculator for use, it is important to understand key stakeholder's views to maximise acceptability and feasibility. This formative work involved running workshops with service users (people with epilepsy and family and friends of people with epilepsy) and epilepsy specialists to understand their preferences regarding the design of the calculator. The results of these workshops will inform how the calculator looks and how results are presented. This work took place over summer 2024 and was covered by University ethics.
We now aim to give 10 epilepsy specialists access to the calculator and ask each to use it 10 times in consultations with different patients. We will then conduct one-to-one interviews with the 10 epilepsy specialists and some of the patients with whom the calculator was used, to learn about their experiences of having it featured in the consultation. We are completing this application for permission to conduct this.
Summary of Results
People with epilepsy and their healthcare professionals often have to make difficult decisions about treatment without knowing how likely someone is to have another seizure. We developed the PRISE tool, which estimates a person's chance of having a seizure over the next 6 or 12 months, to help support these conversations.
To make sure the tool would be useful in real life, we worked closely with people with epilepsy, their family members, and healthcare professionals throughout its development. Together, they reviewed the tool, suggested improvements, and discussed how it could be used in routine epilepsy care. We then asked epilepsy clinicians to use the tool during outpatient clinics and tell us about their experiences.
People involved in the study felt that the PRISE tool could be particularly helpful when decisions about changing medication or treatment were being considered. They also highlighted some important concerns. For example, seeing a predicted risk of future seizures could cause anxiety for some people, and there was a risk that the predictions could be misunderstood if they were not explained carefully. As a result of this feedback, we made several improvements to the tool, including making it easier to use, improving how the results are displayed, showing predictions over 6 and 12 months, and explaining the uncertainty around each prediction.
The clinicians who tested the tool felt it could be a valuable addition to their existing clinical judgement rather than replacing it. However, they also identified practical challenges, such as needing accurate patient information, the extra time required during consultations, and difficulties accessing all the data needed to make predictions.
Overall, the study showed that the PRISE tool has the potential to support shared decision-making between people with epilepsy and their healthcare professionals, especially when treatment decisions are difficult. More work is now needed to improve the tool further, test how well it performs in other groups of patients, and integrate it into hospital computer systems before it could be used routinely in clinical practice.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
24/NW/0394
Date of REC Opinion
17 Feb 2025
REC opinion
Further Information Favourable Opinion