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Abstracts

Bridging the Divide: Enhancing Communication and Care Between People Living With Epilepsy and Their Healthcare Providers

Abstract number : 2.016
Submission category : 11. Behavior/Neuropsychology/Language / 11A. Adult
Year : 2025
Submission ID : 765
Source : www.aesnet.org
Presentation date : 12/7/2025 12:00:00 AM
Published date :

Authors :
Presenting Author: Danya Kaye, BA – UCB, Morrisville, NC, United States

Cheryl Hudson, PhD – UCB, Slough, United Kingdom
Cédric Laloyaux, PhD – UCB, Brussels, Belgium
Judith Luker, BA Hons – UCB, Slough, United Kingdom
Torie Robinson, Patient Author – CEO Epilepsy Sparks, London, United Kingdom; Governor of South London & Maudsley NHS Trust, London, United Kingdom
Leonie Wollscheid, M.Eng, Patient Author – Epilepsie Empowerment Deutschland e.V., Karlsruhe, Germany
Manuel Toledo Argany, MD, PhD – Epilepsy Unit, Neurology Department, Hospital Vall d´Hebron
Matthew Walker, MA, MBBChir, PhD, FRCP – UCL Queen Square Institute of Neurology, Department of Clinical & Experimental Epilepsy, UCL, London, United Kingdom
Kay Fisher, BA – Experience Engineers, Gerrards Cross, United Kingdom

Rationale: Prolonged seizures (PS) are frightening for people living with epilepsy (PwE) and caregivers. This study aimed to understand the experiences of PwE living with PS and their caregivers and identify opportunities for improving dialogue with healthcare professionals (HCPs) to help increase PwE/caregivers’ confidence, knowledge, and management of their epilepsy.

Methods: Qualitative research was conducted from May–August 2024 in 6 European countries (UK, Italy, Poland, Spain, France, Germany). A mixed methods approach was used, which involved brief pre-interview surveys and 60-minute qualitative deep-dive interviews. Included were PwE ≥ 18 years of age who had experienced ≥ 3 PS (lasting ≥ 2 min) within the past 3 years (with no severe comorbidities) and adult caregivers of PwE with PS.

Results: 50 participants (25 PwE; 25 caregivers) participated in this study. PwE with PS saw HCPs 1–4 times per year and all said they would like more frequent access to their neurologists when they need it and not wait for regular check-ups. Most PwE experiencing PS did not feel that their seizures were controlled; they felt that they had to do their best to manage seizures and mitigate for their occurrence and associated consequences (Fig. 1A). PwE stated that this had a negative impact on their quality of life (QoL). They sought to obtain a sense of control over their epilepsy, which extends beyond treatments/antiseizure medications (ASMs) and seizure control into areas where they felt unsupported (e.g., non-seizure outcomes). PwE wanted to know more about controllable aspects of living with epilepsy, such as stress and sleep management, and stated that they would like for these to be part of the dialogue with their HCPs (Fig. 1B; Fig. 2). PwE who were able to discuss topics beyond seizures with their HCP felt better equipped to manage their epilepsy and achieve a greater sense of control. Caregivers also stated that they would prefer more direct contact with HCPs as they found themselves responding to seizures directly and needed clarity on seizure management protocols (Fig. 2). A complete understanding of protocols for the use of acute medications was lacking among most PwE and caregivers, and caregivers lacked training around their use. Additionally, PwE were not able to identify prodromes, yet most recognized auras. PwE and caregivers said that improved recognition/understanding of seizure patterns and confidence in their response to specific signs and symptoms would contribute to their overall sense of control.

Conclusions: PwE with PS, especially those dealing with unpredictable seizures and/or changes in seizure patterns, would benefit from a more holistic approach in conversations with their HCPs. These conversations should include lifestyle modifications, seizure management protocols, discussions around seizure patterns (including prodromes and auras), training around use of acute treatments, and communication around topics beyond ASMs that affect the QoL of those impacted by epilepsy. Better communication between PwE and caregivers and their HCPs could increase confidence, knowledge, and sense of control, leading to improved QoL and more appropriate use of emergency care.

Funding:

UCB-sponsored



Behavior