The perceived burden of epilepsy: Impact on the quality of life of children and adolescents and their families

Cianchetti, Carlo; Messina, Paolo; Pupillo, Elisabetta; Crichiutti, Giovanni; Baglietto, M. G.; Veggiotti, Pierangelo; Zamponi, Nelia; Casellato, Susanna; Margari, Lucia; Erba, Giuseppe; Beghi, Ettore

doi:10.1016/j.seizure.2014.09.003

Cited by 84 publications

(53 citation statements)

References 24 publications

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“…One means of enhancing the social support would be to provide PWE as well as their family members and caregivers with adequate epilepsy education. This would help reduce the stigma associated with the condition [45] while helping appreciate the legitimate needs of PWE [46]. The use of support groups for both caregivers and PWE also provide the much-needed emotional support through their interaction with other individuals and families in similar predicaments [47].…”

Section: Discussionmentioning

confidence: 99%

Factors associated with increased felt stigma among individuals with epilepsy

Bautista

Shapovalov

Shoraka

2015

Seizure

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Section: Discussionmentioning

confidence: 99%

Factors associated with increased felt stigma among individuals with epilepsy

Bautista

Shapovalov

Shoraka

2015

Seizure

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“…Additionally, social stigmas associated with epilepsy result in a sense of pessimism [8]. A study by Ellis demonstrated that stigma within the family is responsible for triggering some of the behavioral problems in PWEs [7].…”

Section: The Negative Effects On Families Caring For Patients With Epmentioning

confidence: 99%

“…Cianchetti et al [8] 2015 Utilized a questionnaire that assessed the quality of life (QoL) of adolescents with epilepsy and their family members. It concluded that epilepsy impairs all aspects of QoL.…”

Section: Articlementioning

confidence: 99%

“…Families of PWEs should have access to accurate and adequate epilepsy education not only to reduce the stigma associated with the condition [7] but also to debunk unfounded concerns of family members [8], all while helping them to understand the needs of a PWE. For instance, effective education about the condition may help siblings deal with their own feelings of neglect and unequal treatment from parents due to the constant attention required by PWEs, which, if unrecognized, may lead to the development of feelings of jealousy and hate [7].…”

Section: Caring For Individuals With Epilepsy and Their Families: Besmentioning

confidence: 99%

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In focus: The everyday lives of families of adult individuals with epilepsy

Saada

Wang

Bautista

2015

Epilepsy & Behavior

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Epilepsy is a multifaceted chronic neurological disorder with diverse effects on a patient's psychosocial well-being. The impact on quality of life has been well documented, and many studies have addressed the detrimental influences epilepsy has on an individual. However, the emotional impact and the influence of the condition on family members have not been well studied. Furthermore, the majority of the studies on this topic have been confined to childhood epilepsy, and there is only scarce literature that discusses the effects on family members caring for adult patients. The purpose of this literature review was to examine the influence of adult epilepsy on the psychological and social well-being of individual family members. We explored the psychological and physical well-being, satisfaction with social circumstances, and perceived level of support in families of adult patients with intractable epilepsy. The paper also suggests best practices on how to improve the family's quality of life, as well as future directions for research. Superior medical care and a positive family support system are important conditions that can help adult individuals with epilepsy best deal with their condition.

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“…In addition to multiple cognitive, social, and behavioral sequelae, posttraumatic epilepsy (PTE) is a well‐described, long‐term complication of TBI, and one of the most common causes for acquired epilepsy in both the pediatric and adult population 3 . PTE may have severe consequences on the quality of life and neuropsychological functions of young patients 4,5 . Even if remission is achieved in adulthood, social and educational problems may persist.…”

Section: Introductionmentioning

confidence: 99%

Posttraumatic epilepsy in intensive care unit–treated pediatric traumatic brain injury patients

et al. 2020

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Objective: Posttraumatic epilepsy (PTE) is a well-described complication of traumatic brain injury (TBI). The majority of the available data regarding PTE stem from the adult population. Our aim was to identify the clinical and radiological risk factors associated with PTE in a pediatric TBI population treated in an intensive care unit (ICU). Methods: We used the Finnish Intensive Care Consortium database to identify pediatric (<18 years) TBI patients treated in four academic university hospital ICUs in Finland between 2003 and 2013. Our primary outcome was the development of PTE, defined as the need for oral antiepileptic medication in patients alive at 6 months. We assessed the risk factors associated with PTE using multivariable logistic regression modeling. Results: Of the 290 patients included in the study, 59 (20%) developed PTE. Median age was 15 years (interquartile range [IQR] 13-17), and 80% had an admission Glasgow Coma Scale (GCS) score ≤12. Major risk factors for developing PTE were age (adjusted odds ratio [OR] 1.08, 95% confidence interval [CI] 1.00-1.16), obliterated suprasellar cisterns (OR 6.53, 95% CI 1.95-21.81), and an admission GCS score of 9-12 in comparison to a GCS score of 13-15 (OR 2.88, 95% CI 1.24-6.69). Significance: We showed that PTE is a common long-term complication after ICUtreated pediatric TBI. Higher age, moderate injury severity, obliterated suprasellar cisterns, seizures during ICU stay, and surgical treatment are associated with an increased risk of PTE. Further studies are needed to identify strategies to decrease the risk of PTE. K E Y W O R D Sepilepsy, intensive care unit, pediatric, traumatic brain injury 694 |

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The perceived burden of epilepsy: Impact on the quality of life of children and adolescents and their families

Abstract: Epilepsy impairs all aspects of QoL, although at different degree, both in children/adolescents and in their families. Parental apprehensiveness appears to have a role on this, and it may not reflect the severity of the disease.

Cited by 84 publications

References 24 publications

Factors associated with increased felt stigma among individuals with epilepsy

Factors associated with increased felt stigma among individuals with epilepsy

In focus: The everyday lives of families of adult individuals with epilepsy

Posttraumatic epilepsy in intensive care unit–treated pediatric traumatic brain injury patients

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