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Caregiver Burden in Epilepsy: Determinants and Impact

DOI: 10.1155/2014/808421

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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, often 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]. The 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], amyotrophic lateral sclerosis [11], traumatic brain [12], or spinal cord injury [13], the impact of epilepsy on the family constitutes 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


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