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
N1 - Funding Information:
Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans From the *Minnesota Epilepsy Group, St. Paul, MN; wIndiana University School of Nursing, Indianapolis, IN; zHarris Poll, New York, NY; yMayo Clinic Arizona, Department of Neurology, Phoenix, AZ; and 8Le Bonheur Children’s Hospital and University of Tennessee Health Science Center, Memphis, TN. J.B. was at the Epilepsy Foundation, Landover, MD at time of study. The survey conducted online by Harris Poll (on behalf of the Epilepsy Foundation) received unrestricted grant support from Upsher-Smith Laboratories Inc. P.E.P.: received consulting fees from UCB—speakers bureau and advisory board; Lundbeck and Sunovian—speakers bureau; and Upsher-Smith—consultant. J.B.: received consulting fees from Upsher-Smith and Acorda. K.S.: received grants from Upsher-Smith to conduct the study. J.S.: reveived consulting fees from UCB, Acadia, Upsher-Smith, and NeuroPace Inc. J.W.: has the following disclosures: Lundbeck—consultant, speakers bureau; Questcor—speakers bureau; Cyberonics—consultant, speakers bureau; Eisai—consultant, speakers bureau; Sunovion—consultant; Supernus—consultant; Upsher-Smith— consultant, NIH—grant; Shainberg Foundation—grant; GSK—grant; Pfizer—grant; Eisai—grant. Reprints: Patricia E. Penovich, MD, Minnesota Epilepsy Group, St. Paul, MN, 55102. E-mail: ppenovich@mnepilepsy.net. Supplemental Digital Content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Website, www.theneurologist.org. Copyright © 2017 The Author(s). Published by Wolters Kluwer Health, Inc. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. ISSN: 1074-7931/17/2206-0207 DOI: 10.1097/NRL.0000000000000140 and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.
Funding Information:
The Seizure Cluster Burden of Illness US Survey was conducted online (September 2 to 30, 2014) by Harris Poll on behalf of The Epilepsy Foundation with unrestricted grant support from Upsher-Smith Laboratories Inc. The questionnaire was B20 minutes in length, consisting primarily of closed-ended pick-list and grid questions. Queries assessed overall patient health, the impact of seizure disorder, and SC on QOL (emotional, social, work/school), and the care, management, and treatment of seizure disorders and SC. The operational definition for “SC” used in this survey was Z2 seizures/24 hours outside a patient’s typical seizure pattern. To assess eligibility, participants were asked “Have you/has your family member, friend, or loved one ever experienced 2 or more seizures within a 24-hour period that are outside your/their typical seizure pattern?” Only respondents who selected the option “Yes, within the past 12 months” could proceed to the remaining questions in the survey as qualified respondents (the other 3 options to answer the question were “Yes, more than 12 months ago,” “No, I/they have never experienced 2 or more seizures within a 24-hour period that are outside my/their typical seizure pattern,” and “Not sure/don’t remember”). This operational def inition of SC was based on adult and adolescent data for most common seizure types, namely partial with or without secondary generalization; the clause “outside your typical seizure pattern” was used to exclude patient conditions or circumstances where multiple seizures in a 24-hour period are a common occurrence.
Publisher Copyright:
© 2017 The Author(s).
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 - Key Words: Epilepsy
KW - caregivers
KW - quality of life
KW - seizure clusters
KW - survey
UR - http://www.scopus.com/inward/record.url?scp=85033211407&partnerID=8YFLogxK
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U2 - 10.1097/NRL.0000000000000140
DO - 10.1097/NRL.0000000000000140
M3 - Review article
C2 - 29095321
AN - SCOPUS:85033211407
SN - 1074-7931
VL - 22
SP - 207
EP - 214
JO - Neurologist
JF - Neurologist
IS - 6
ER -