Research Article
Caregiver Burden in Epilepsy: Determinants and Impact
Ioannis Karakis,
1
Andrew J. Cole,
2
Georgia D. Montouris,
3
Marta San Luciano,
4
Kimford J. Meador,
1,5
and Charitomeni Piperidou
6
1
Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA
2
MGH Epilepsy Service, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
3
Department of Neurology, Boston Medical Center, Boston University School of Medicine, Boston, MA, USA
4
Department of Neurology, University California San Francisco, San Francisco, CA, USA
5
Department of Neurology, Stanford School of Medicine, Stanford, CA, USA
6
Department of Neurology, Democritus University of race, Alexandroupolis, Greece
Correspondence should be addressed to Ioannis Karakis; ioannis.karakis@emory.edu
Received 3 October 2013; Revised 2 March 2014; Accepted 3 March 2014; Published 8 April 2014
Academic Editor: Raffaele Manni
Copyright © 2014 Ioannis Karakis et al. is is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Aim. Caregiver burden (CB) in epilepsy constitutes an understudied area. Here we attempt to identify the magnitude of this
burden, the factors associated with it, and its impact to caregiver quality of life (QOL). Methods. 48 persons with epilepsy
(PWE) underwent video-EEG monitoring and their caregivers completed questionnaires providing demographic, disease-related,
psychiatric, cognitive, sleep, QOL, and burden information. Results. On regression analysis, higher number of antiepileptic drugs,
poorer patient neuropsychological performance, lower patient QOL score, and lower caregiver education level were associated with
higher CB. Time allocated to patient care approximated but did not attain statistical significance. A moderate inverse correlation
between CB and caregiver QOL physical component summary score and a stronger inverse correlation between CB and caregiver
QOL mental component summary score were seen. Conclusion. In a selected cohort of PWE undergoing video-EEG monitoring,
we identified modest degree of CB, comparable to that reported in the literature for other chronic neurological conditions. It is
associated with specific patient and caregiver characteristics and has a negative effect on caregiver QOL.
1. Introduction
Epilepsy is an unpredictable, oſten chronic and debilitating
disorder that impacts not only those bearing with it but also
those who care for them. Epilepsy is thought to affect more
than 100 million individuals and their families worldwide at
some point of their lives, thus constituting a major, universal,
public health issue [1].
It is well established that epilepsy impacts the quality of
life (QOL) of patients. Loss of control and independence, low
self-esteem, fear, depression, stigmatization, lifestyle, social
and employment restrictions, and financial strains are ways in
which this impact occurs [2]. e same factors also indirectly
affect care providers for those patients.
In contrast to other chronic medical conditions such as
congestive heart failure [3], chronic obstructive pulmonary
disease [4], chronic renal failure [5], cancer [6], and chronic
neurological disorders such as stroke [7], Alzheimer’s disease
[8], Parkinson’s disease [9], multiple sclerosis [10], amy-
otrophic lateral sclerosis [11], traumatic brain [12], or spinal
cord injury [13], the impact of epilepsy on the family consti-
tutes an understudied area. As illustrated in Figure 1, despite
being the fourth most common neurological condition,
caregiver burden in epilepsy has attracted disproportionally
less attention than in less prevalent neurological conditions
such as Alzheimer’s disease, multiple sclerosis, Parkinson’s
disease, and amyotrophic lateral sclerosis. When caregiver
burden and QOL-related issues have been explored, most
studies have focused on the pediatric population [2, 14–28].
e data on caregivers of adult patients remains sparse [29–
35] and most studies have been performed outside the United
States.
Given the scarcity in the literature in this area, we
sought to quantify caregiver burden in epilepsy, determine
Hindawi Publishing Corporation
Epilepsy Research and Treatment
Volume 2014, Article ID 808421, 9 pages
http://dx.doi.org/10.1155/2014/808421