Burden of Seizure Clusters on Patients with Epilepsy and Caregivers

Patricia E. Penovich, Janice Buelow, Kathy Steinberg, Joseph Sirven, James Wheless

Research output: Contribution to journalReview article

4 Citations (Scopus)

Abstract

Objectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient's typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30% of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.

Original languageEnglish (US)
Pages (from-to)207-214
Number of pages8
JournalNeurologist
Volume22
Issue number6
DOIs
StatePublished - 2017

Fingerprint

Caregivers
Epilepsy
Seizures
Emergencies
Post-Traumatic Epilepsy
Cost of Illness
Practice Management
Internet
Hospital Emergency Service
Patient Care
Quality of Life
Surveys and Questionnaires
Pediatrics
Education

Keywords

  • caregivers
  • Key Words: Epilepsy
  • quality of life
  • seizure clusters
  • survey

ASJC Scopus subject areas

  • Clinical Neurology

Cite this

Penovich, P. E., Buelow, J., Steinberg, K., Sirven, J., & Wheless, J. (2017). Burden of Seizure Clusters on Patients with Epilepsy and Caregivers. Neurologist, 22(6), 207-214. https://doi.org/10.1097/NRL.0000000000000140

Burden of Seizure Clusters on Patients with Epilepsy and Caregivers. / Penovich, Patricia E.; Buelow, Janice; Steinberg, Kathy; Sirven, Joseph; Wheless, James.

In: Neurologist, Vol. 22, No. 6, 2017, p. 207-214.

Research output: Contribution to journalReview article

Penovich, PE, Buelow, J, Steinberg, K, Sirven, J & Wheless, J 2017, 'Burden of Seizure Clusters on Patients with Epilepsy and Caregivers', Neurologist, vol. 22, no. 6, pp. 207-214. https://doi.org/10.1097/NRL.0000000000000140
Penovich, Patricia E. ; Buelow, Janice ; Steinberg, Kathy ; Sirven, Joseph ; Wheless, James. / Burden of Seizure Clusters on Patients with Epilepsy and Caregivers. In: Neurologist. 2017 ; Vol. 22, No. 6. pp. 207-214.
@article{48f9c3cf20db4e1dad7cb179b437bc73,
title = "Burden of Seizure Clusters on Patients with Epilepsy and Caregivers",
abstract = "Objectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient's typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30{\%} of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.",
keywords = "caregivers, Key Words: Epilepsy, quality of life, seizure clusters, survey",
author = "Penovich, {Patricia E.} and Janice Buelow and Kathy Steinberg and Joseph Sirven and James Wheless",
year = "2017",
doi = "10.1097/NRL.0000000000000140",
language = "English (US)",
volume = "22",
pages = "207--214",
journal = "Neurologist",
issn = "1074-7931",
publisher = "Lippincott Williams and Wilkins",
number = "6",

}

TY - JOUR

T1 - Burden of Seizure Clusters on Patients with Epilepsy and Caregivers

AU - Penovich, Patricia E.

AU - Buelow, Janice

AU - Steinberg, Kathy

AU - Sirven, Joseph

AU - Wheless, James

PY - 2017

Y1 - 2017

N2 - Objectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient's typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30% of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.

AB - Objectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient's typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30% of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.

KW - caregivers

KW - Key Words: Epilepsy

KW - quality of life

KW - seizure clusters

KW - survey

UR - http://www.scopus.com/inward/record.url?scp=85033211407&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85033211407&partnerID=8YFLogxK

U2 - 10.1097/NRL.0000000000000140

DO - 10.1097/NRL.0000000000000140

M3 - Review article

C2 - 29095321

AN - SCOPUS:85033211407

VL - 22

SP - 207

EP - 214

JO - Neurologist

JF - Neurologist

SN - 1074-7931

IS - 6

ER -