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
References
[1]
E. H. Reynolds, “The ILAE/IBE/WHO Global Campaign against Epilepsy: bringing epilepsy ‘out of the shadows’,” Epilepsy and Behavior, vol. 1, no. 4, pp. S3–S8, 2000.
[2]
C. O'Dell, J. W. Wheless, and J. Cloyd, “The personal and financial impact of repetitive or prolonged seizures on the patient and family,” Journal of Child Neurology, vol. 22, no. 5, supplement, pp. 61S–70S, 2007.
[3]
R. B. Trivedi, J. Piette, S. D. Fihn, and D. Edelman, “Examining the interrelatedness of patient and spousal stress in heart failure: conceptual model and pilot data,” Journal of Cardiovascular Nursing, vol. 27, no. 1, pp. 24–32, 2012.
[4]
R. A. Pinto, M. A. Holanda, M. M. C. Medeiros, R. M. S. Mota, and E. D. B. Pereira, “Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease,” Respiratory Medicine, vol. 101, no. 11, pp. 2402–2408, 2007.
[5]
F. Alvarez-Ude, C. Valdés, C. Estébanez, and P. Rebollo, “Health-related quality of life of family caregivers of dialysis patients,” Journal of Nephrology, vol. 17, no. 6, pp. 841–850, 2004.
[6]
E. Grunfeld, D. Coyle, T. Whelan et al., “Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers,” Canadian Medical Association Journal, vol. 170, no. 12, pp. 1795–1801, 2004.
[7]
F. J. Carod-Artal, L. Ferreira Coral, D. S. Trizotto, and C. Menezes Moreira, “Burden and perceived health status among caregivers of stroke patients,” Cerebrovascular Diseases, vol. 28, no. 5, pp. 472–480, 2009.
[8]
C. J. M. Sch？lzel-Dorenbos, I. Draskovic, M. J. Vernooij-Dassen, and M. G. M. Olde Rikkert, “Quality of life and burden of spouses of Alzheimer disease patients,” Alzheimer Disease and Associated Disorders, vol. 23, no. 2, pp. 171–177, 2009.
[9]
P. Martínez-Martín, M. J. Forjaz, B. Frades-Payo et al., “Caregiver burden in Parkinson's disease,” Movement Disorders, vol. 22, no. 7, pp. 924–931, 2007.
[10]
J. Rivera-Navarro, J. Benito-León, C. Oreja-Guevara et al., “Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis,” Multiple Sclerosis, vol. 15, no. 11, pp. 1347–1355, 2009.
[11]
F. Pagnini, C. Lunetta, G. Rossi et al., “Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers,” Amyotrophic Lateral Sclerosis, vol. 12, no. 2, pp. 105–108, 2011.
[12]
E. Bayen, P. Pradat-Diehl, C. Jourdan, et al., “Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study,” The Journal of Head Trauma Rehabilitation, vol. 28, no. 6, pp. 408–418, 2013.
[13]
L. Blanes, M. I. S. Carmagnani, and L. M. Ferreira, “Health-related quality of life of primary caregivers of persons with paraplegia,” Spinal Cord, vol. 45, no. 6, pp. 399–403, 2007.
[14]
K. R. Kim, E. Lee, K. Namkoong, Y. M. Lee, J. S. Lee, and H. D. Kim, “Caregiver's burden and quality of life in mitochondrial disease,” Pediatric Neurology, vol. 42, no. 4, pp. 271–276, 2010.
[15]
K. Gallop, D. Wild, A. Nixon, L. Verdian, and J. A. Cramer, “Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: literature review,” Seizure, vol. 18, no. 8, pp. 554–558, 2009.
[16]
G. Ramaglia, A. Romeo, M. Viri, M. Lodi, S. Sacchi, and G. Cioffi, “Impact of idiopathic epilepsy on mothers and fathers: strain, burden of care, worries and perception of vulnerability,” Epilepsia, vol. 48, no. 9, pp. 1810–1813, 2007.
[17]
M. A. Ferro and K. N. Speechley, “Examining clinically relevant levels of depressive symptoms in mothers following a diagnosis of epilepsy in their children: a prospective analysis,” Social Psychiatry and Psychiatric Epidemiology, vol. 47, no. 9, pp. 1419–1428, 2012.
[18]
M. R. Asato, R. Manjunath, R. D. Sheth et al., “Adolescent and caregiver experiences with epilepsy,” Journal of Child Neurology, vol. 24, no. 5, pp. 562–571, 2009.
[19]
B. Desnous, E. Bourel-Ponchel, E. Raffo, et al., “Assessment of education needs of adolescents and parents of children with epilepsy,” Revue Neurologique, vol. 169, no. 1, pp. 67–75, 2013.
[20]
J. Taylor, A. Jacoby, G. A. Baker, and A. G. Marson, “Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy,” Epilepsia, vol. 52, no. 8, pp. 1489–1498, 2011.
[21]
C. Camfield, L. Breau, and P. Camfield, “Impact of pediatric epilepsy on the family: a new scale for clinical and research use,” Epilepsia, vol. 42, no. 1, pp. 104–112, 2001.
[22]
V. C. Terra, R. M. Cysneiros, J. S. Schwartzman et al., “Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective,” Disability and Rehabilitation, vol. 33, no. 5, pp. 384–388, 2011.
[23]
R. Lv, L. Wu, L. Jin et al., “Depression, anxiety and quality of life in parents of children with epilepsy,” Acta Neurologica Scandinavica, vol. 120, no. 5, pp. 335–341, 2009.
[24]
S. Cushner-Weinstein, K. Dassoulas, J. A. Salpekar et al., “Parenting stress and childhood epilepsy: the impact of depression, learning, and seizure-related factors,” Epilepsy and Behavior, vol. 13, no. 1, pp. 109–114, 2008.
[25]
A. M. McNelis, J. Buelow, J. Myers, and E. A. Johnson, “Concerns and needs of children with epilepsy and their parents,” Clinical Nurse Specialist, vol. 21, no. 4, pp. 195–202, 2007.
[26]
K. Snead, J. Ackerson, K. Bailey, M. M. Schmitt, A. Madan-Swain, and R. C. Martin, “Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents,” Epilepsy and Behavior, vol. 5, no. 4, pp. 547–556, 2004.
[27]
J. Williams, C. Steel, G. B. Sharp et al., “Parental anxiety and quality of life in children with epilepsy,” Epilepsy and Behavior, vol. 4, no. 5, pp. 483–486, 2003.
[28]
P. Hoare, “The quality of life of children with chronic epilepsy and their families,” Seizure, vol. 2, no. 4, pp. 269–275, 1993.
[29]
J. R. Hughes, “Psychosocial well-being of carers of people with epilepsy in Hong Kong,” Epilepsy and Behavior, vol. 3, no. 2, pp. 147–157, 2002.
[30]
F. Tajudeen Nuhu, A. Jika Yusuf, A. Akinbiyi et al., “The burden experienced by family caregivers of patients with epilepsy attending the government psychiatric hospital, Kaduna, Nigeria,” The Pan African Medical Journal, vol. 5, p. 16, 2010.
[31]
P. J. Thompson and D. Upton, “The impact of chronic epilepsy on the family,” Seizure, vol. 1, no. 1, pp. 43–48, 1992.
[32]
J. van Andel, W. Westerhuis, M. Zijlmans, K. Fischer, and F. S. S. Leijten, “Coping style and health-related quality of life in caregivers of epilepsy patients,” Journal of Neurology, vol. 258, no. 10, pp. 1788–1794, 2011.
[33]
J. van Andel, M. Zijlmans, K. Fischer, and F. S. S. Leijten, “Quality of life of caregivers of patients with intractable epilepsy,” Epilepsia, vol. 50, no. 5, pp. 1294–1296, 2009.
[34]
A. C. Westphal-Guitti, N. B. Alonso, R. C. V. P. Migliorini et al., “Quality of life and burden in caregivers of patients with epilepsy,” The Journal of Neuroscience Nursing, vol. 39, no. 6, pp. 354–360, 2007.
[35]
J. U. Ohaeri, A. W. Awadalla, and A. A. Farah, “Quality of life in people with epilepsy and their family caregivers: an Arab experience using the short version of the World Health Organization quality of life instrument,” Saudi Medical Journal, vol. 30, no. 10, pp. 1328–1335, 2009.
[36]
A. T. Beck, N. Epstein, G. Brown, and R. A. Steer, “An inventory for measuring clinical anxiety: psychometric properties,” Journal of Consulting and Clinical Psychology, vol. 56, no. 6, pp. 893–897, 1988.
[37]
A. T. Beck and R. A. Steer, Manual for the Beck Depression Inventory, Psychological Corporation, San Antonio, Tex, USA, 1993.
[38]
D. W. Loring, K. J. Meador, and G. P. Lee, “Determinants of quality of life in epilepsy,” Epilepsy and Behavior, vol. 5, no. 6, pp. 976–980, 2004.
[39]
M. W. Johns, “A new method for measuring daytime sleepiness: the Epworth sleepiness scale,” Sleep, vol. 14, no. 6, pp. 540–545, 1991.
[40]
A. B. Douglass, R. Bornstein, G. Nino-Murcia et al., “The Sleep Disorders Questionnaire I: creation and multivariate structure of SDQ,” Sleep, vol. 17, no. 2, pp. 160–167, 1994.
[41]
A. S. Giorelli, G. S. D. M. L. Neves, M. Venturi, I. M. Pontes, A. Valois, and M. D. M. Gomes, “Excessive daytime sleepiness in patients with epilepsy: a subjective evaluation,” Epilepsy and Behavior, vol. 21, no. 4, pp. 449–452, 2011.
[42]
C. Piperidou, A. Karlovasitou, N. Triantafyllou et al., “Influence of sleep disturbance on quality of life of patients with epilepsy,” Seizure, vol. 17, no. 7, pp. 588–594, 2008.
[43]
J. A. Cramer, K. Perrine, O. Devinsky, L. Bryant-Comstock, K. Meador, and B. Hermann, “Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory,” Epilepsia, vol. 39, no. 1, pp. 81–88, 1998.
[44]
Z. S. Nasreddine, N. A. Phillips, V. Bédirian et al., “The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment,” Journal of the American Geriatrics Society, vol. 53, no. 4, pp. 695–699, 2005.
[45]
K. Phabphal and J. Kanjanasatien, “Montreal Cognitive Assessment in cryptogenic epilepsy patients with normal Mini-Mental State Examination scores,” Epileptic Disorders, vol. 13, no. 4, pp. 375–381, 2011.
[46]
S. H. Zarit, K. E. Reever, and J. Bach-Peterson, “Relatives of the impaired elderly: correlates of feelings of burden,” Gerontologist, vol. 20, no. 6, pp. 649–655, 1980.
[47]
J. E. Ware Jr. and B. Gandek, “Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) project,” Journal of Clinical Epidemiology, vol. 51, no. 11, pp. 903–912, 1998.
[48]
D. Hirtz, D. J. Thurman, K. Gwinn-Hardy, M. Mohamed, A. R. Chaudhuri, and R. Zalutsky, “How common are the “common” neurologic disorders?” Neurology, vol. 68, no. 5, pp. 326–337, 2007.
[49]
F. Zimmermann and M. Endermann, “Self-proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities,” Epilepsy and Behavior, vol. 13, no. 1, pp. 202–211, 2008.
[50]
M. Pinquart and S. S？rensen, “Helping caregivers of persons with dementia: which interventions work and how large are their effects?” International Psychogeriatrics, vol. 18, no. 4, pp. 577–595, 2006.
[51]
M. J. V. Pugh, D. R. Berlowitz, G. Montouris et al., “What constitutes high quality of care for adults with epilepsy?” Neurology, vol. 69, no. 21, pp. 2020–2027, 2007.
[52]
D. C. Hesdorffer, V. Beck, C. E. Begley, et al., “Research implications of the Institute of Medicine Report, epilepsy across the spectrum: promoting health and understanding,” Epilepsia, vol. 54, no. 2, pp. 207–216, 2013.
