Enhanced Communication Key to Improving Epilepsy Patient Care and Control
A new study highlights the critical need for more holistic and frequent conversations between individuals with epilepsy, their caregivers, and healthcare providers to improve quality of life and a sense of control over the condition.
Individuals living with epilepsy and their caregivers are seeking more robust communication and a broader understanding of their condition from healthcare professionals, according to research presented at the American Epilepsy Society annual meeting in Atlanta, December 5-9, 2025. The findings underscore a gap in current clinical practice, where standard visits often focus narrowly on seizure frequency and medication, neglecting crucial aspects of patient well-being.
Researchers, led by Danya Kaye, BA, global patient engagement and advocacy lead, epilepsy, at UCB, aimed to identify missed opportunities during clinical encounters that could enhance patient care. “This research explored missed opportunities during clinical visits that could enhance patient care,” Kaye told Healio. The qualitative study involved 50 participants – 25 individuals with epilepsy experiencing prolonged seizures and 25 caregivers – who completed surveys and participated in 60-minute in-depth interviews. Participants were adults aged 18 years or older who had experienced at least three prolonged seizures (lasting at least 2 minutes) within the past three years.
The central question guiding the research was: “What improvements in communication do patients with epilepsy who experience prolonged seizures and their caregivers need from their HCPs?” The study revealed that patients’ primary concern is gaining a sense of control over their condition. Current clinical visits, Kaye explained, “miss key determinants of patient control” for adults experiencing prolonged seizures.
Instead of solely focusing on medication and seizure frequency, patients and caregivers expressed a desire for structured discussions encompassing lifestyle modifications, mental health, emotional well-being, seizure patterns, seizure action plans, rescue medication training, and caregiver involvement. These conversations, researchers found, can significantly improve quality of life, reduce reliance on emergency services, and bolster patients’ sense of control. “Without explicitly aligning definitions and expectations around seizure control, treatment success is judged differently by clinicians and patients, undermining shared decision-making,” Kaye stated.
Participants also voiced a preference for more frequent and extended access to their neurologists, rather than relying solely on scheduled checkups. “Patients and caregivers want more frequent, longer access to neurology teams,” Kaye said. “The current cadence, often one to four visits a year, leaves questions unanswered when patterns change.” Many patients reported feeling unable to control their seizures, leading to a focus on managing symptoms and mitigating their impact, negatively affecting their overall quality of life.
Understanding controllable aspects of living with epilepsy – such as stress management, sleep hygiene, and trigger recognition – and incorporating these discussions into clinical visits was also identified as crucial. Patients who engaged in broader conversations felt better equipped to manage their condition and regain a sense of control.
Caregivers emphasized the need for more direct contact with healthcare providers and comprehensive training on managing seizures, including the administration of rescue medications. They also expressed a desire to be actively involved in clinical visits, receiving information directly rather than relying on patient recall. “Rescue medications and seizure action plans are under-understood and underused,” Kaye noted. “Targeted education and hands-on training are requested and could prevent avoidable use of emergency services.” Caregivers also sought guidance on preparing for and assisting in seizure recovery, as well as reassurance regarding appropriate intervention strategies. “Caregivers are key responders and want direct contact and inclusion in visits to ensure accurate recall and effective response at home,” Kaye added.
Improved recognition of the prodromal phase – the period before a seizure begins – and identifying seizure patterns were also highlighted as potential avenues for boosting confidence and enhancing control. Furthermore, both patients and caregivers expressed a need for more open conversations surrounding mental health and quality of life, extending beyond the diagnosis of comorbidities like anxiety and depression.
“Adults with epilepsy who experience prolonged seizures often lack holistic discussions with their health care providers beyond medication,” Kaye concluded. “Improving these conversations can increase patient confidence, reduce emergency visits, and improve quality of life.”
For more information, Danya Kaye, BA, can be reached at danya.kaye@ucb.com.
Source: Kaye D, et al. Bridging the divide: Enhancing communication and care between people living with epilepsy and their health care providers. Presented at: American Epilepsy Society annual meeting; Dec. 5-9, 2025; Atlanta.
Disclosure: Kaye is employed by and is a stockholder in UCB Pharma, which sponsored the study.