J. Buelow, P. Shafer, R. Shinnar, J. Austin, S. Dewar, L. Long, K. O’Hara, N. Santilli.  Epilepsy & Behavior 57(2016)16-22.

Purpose

Seizure clustering happens when seizures occur in a more frequent or different pattern than usual. Despite this common problem, the definition of seizure clusters and consumer (patients/families) and health care professional (HCP) perspectives can be quite varied.

Based on a review of the medical literature and an analysis of social media, this paper describes and compares consumer and HCP understanding of seizure clusters, as well as how consumers and HCPs communicate regarding seizure clusters.

Description of Study

The research was performed on:

  • Social media review of Internet discussions to gain patient/family perspectives of seizure clusters on websites offering public community forums, including the websites of the Epilepsy Foundation, the Lennox-Gastaut Syndrome Foundation, the Tuberous Sclerosis Alliance, the Dravet Syndrome Foundation, Seizure Tracker, and Patients Like Me.
  • Posts from the epilepsy.com Community Forums were then searched using terms including “acute repetitive seizures,” “acute seizures,” “bouts of seizures,” “clusters,” “cluster seizures,” “Ativan,” and “Diastat.”
  • Medical literature was reviewed using PubMed and MEDLINE search engines over a 47 year period using the search terms “cluster seizures” and “acute repetitive seizures,” which yielded an initial count of 635 articles that were reviewed and ultimately 38 were included.

Summary of Study Findings

  • Consumer perspectives on seizure clusters were categorized into the following themes: diagnosis and communication; frequency; duration, and time frame; seizure type and pattern; severity; impact; when to treat and self-management; and risk factors.  With regards to diagnosis and communication, there was confusion of what clusters were and whether consumers were successful in communicating effectively with their providers about them. Frequency, duration, and time frame of clusters varied widely amongst reports. Severity reflected the person’s heightened sense of epilepsy severity with clusters, and impact delineated how clusters affected their daily and family life.
  • The medical literature review mirrored the categories used in consumer review and revealed the following themes: frequency, duration, and time frame, risk factors, severity, and prevalence and incidence.  While conceptually many articles used an operational definition of clusters as increased frequency of seizures in either a 12 or 24 hour period, this was not consistent. There were several articles that identified common risk factors for clusters, such as sleep and sleep deprivation, alcohol ingestion, and illness. Severity was not well-addressed in the literature. The impact of clusters was recognized as a sign of needing increased intervention due to complications, such as progression to status epilepticus, consumers requiring hospital care, and possible increased mortality rate.
  • Comparisons between consumer websites and the medical literature review indicated very broad differences between frequency, duration, and time frame, as well as impact. Impact for consumers included broad implications that extended to work and family life, whereas providers focused on health outcomes. Neither group discussed how consumers and providers could communicate regarding this important topic.

What does this mean?

  • Because of varying definitions of what a seizure cluster is, there is the potential for significant gaps in recognition and discussion of seizure clusters. Gaps in understanding and recognition can interfere with meaningful discussion. Some consumer comments reflected concerns that their providers might not believe their reports about seizure clusters, which might further impair communication and trust with their providers.  
  • While both groups perceived clusters as severe, providers might focus on health outcomes, whereas consumers had more specific concerns regarding what to do (e.g., how to identify triggers, when to seek help, how to use rescue therapies) indicating a need to include cluster management in a seizure action plan. Consumers should be provided information and anticipatory guidance that clusters can occur and what steps to take in such situations.
  • Further studies should focus on developing common language and terminology for both providers and consumers to enhance communication around seizure clusters, improve seizure control by designing studies investigating how common clusters occur in different types of epilepsies, guide treatment studies by using clusters as a treatment target, and ultimately improve long term outcomes. 

Article published in Epilepsy & Behavior, April 2016

Authored By: 
Miya Asato MD | Member
Epilepsy Foundation Professional Advisory Board
Authored Date: 
04/2016
Reviewed By: 
Nathan B. Fountain MD
Epilepsy Foundation Professional Advisory Board
on: 
Tuesday, April 26, 2016