Health care professionals and patients with epilepsy lack a common understanding of seizure clusters, according to research published in the April issue of Epilepsy & Behavior. Physicians and patients have differing ideas about the diagnosis, impact, and management of seizure clusters, and communication between these groups consequently is difficult. Investigators also cite a gap in the understanding of seizure clusters among health care providers as a group, and among patients as a group.
“An accepted, simple working definition of [seizure] clusters is needed that can be translated into consumer-friendly language,” said, Janice Buelow, RN, PhD, Associate Professor Emeritus at Indiana University School of Nursing in Annapolis, and colleagues. “This requires a common clinical lexicon to describe seizure clusters to facilitate communication among consumers, as well as between consumers and clinicians.” She defines consumers as including patients and caregivers.
Seizure clusters are not part of the International League Against Epilepsy Commission on Classification and Terminology, and neurologists have used inconsistent terminology to describe these events. Dr. Buelow and colleagues sought to describe and compare physicians’ and patients’ understanding of seizure clusters and to determine how these groups communicate about them. They reviewed websites with community forums such as those of the Epilepsy Foundation, Seizure Tracker, and Patients Like Me to describe patients’ understanding of seizure clusters. To describe clinicians’ understanding of seizure clusters, the investigators searched the literature for relevant articles.
Posts on community forums indicated that patients were confused about the meaning of a diagnosis of seizure clusters. Some patients thought that their physicians did not believe them when they reported having seizure clusters, which could reflect “a larger communication gap,” said Dr. Buelow. Patients also lacked confidence that physicians acknowledged their concerns about the events.
Clinicians viewed seizure clusters as a clinical event and discussed them in terms of frequency, duration, and appropriate treatment. In contrast, patients’ definitions focused on how seizure clusters affected their lives and showed little understanding of frequency.
The investigators observed that patients described seizure clusters as different from their usual seizures. Patients also remarked that a pattern of seizure clusters has a significant impact on their daily lives. Recurrent seizures contribute to a heightened sense of severity among patients, and misperceptions about the distinction between seizure clusters and status epilepticus can cause confusion, said the researchers.
The literature search revealed a lack of consensus among neurologists about what constitutes a seizure cluster. The literature also contained few discussions about risk factors, in contrast with community forums. Physicians’ discussions of severity focused on complications of seizure clusters such as status epilepticus or postictal psychosis. Professional discussions of the impact of seizure clusters mentioned progression to status epilepticus, emergency room visits, and hospital admissions rather than their influence on daily life. Neither patients nor physicians discussed how the groups communicate about seizure clusters.