Quality of life study for caregivers of people with uncontrolled focal-onset seizures

Soare, Ioana-Alexandra; Flint, India; Savić, Nataša; Puricelli, Fiorenza; Medjedovic, Jasmina; O’Flaherty, Ewa Drogon; James, Samuel; Longworth, Louise

doi:10.1080/13696998.2021.2018871

Cited by 4 publications

(2 citation statements)

References 29 publications

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“…Caring for someone with a chronic condition such as epilepsy may uniquely burden caregivers due to the complexity and pervasive nature of symptoms [2] , [3] . Caregiver burden may be described as the level of multifaceted strain perceived by the caregiver as a result of providing care for a family member or loved one over time [5] , often in an informal manner [6] . The responsibilities of caring for a person with epilepsy may include managing stress related to stigma associated with an epilepsy diagnosis, particularly if the care recipient is a family member; seizure unpredictability [7] ) (i.e., seizure burden) and associated fear of injury or death [8] ; caring for symptoms of epilepsy and psychological comorbidity [2] ; economic burden, and the clinical impacts on caregivers themselves (e.g., depression, anxiety, insomnia) [9] .…”

Section: Introductionmentioning

confidence: 99%

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Viny¹,

Trevino²,

Bouldin³

et al. 2023

Epilepsy & Behavior

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Section: Introductionmentioning

confidence: 99%

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Viny¹,

Trevino²,

Bouldin³

et al. 2023

Epilepsy & Behavior

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“…the percentage reported that, 25% of the global epilepsy populations are children under 15 years old that were diagnosed with active epilepsy. It is equivalent to 10.5 million of the total global population [5].…”

Section: Study Backgroundmentioning

confidence: 99%

Caregivers’ Knowledge on Epilepsy and Its Relationship with Quality of Life

Lee

Hamzah

Rashid

2023

EJMED

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It is widely accepted that epilepsy is a disease that affects not only patients but also their families. The disease has a relevant impact on caregivers’ quality of life. The study aimed to determine caregivers’ knowledge of epilepsy and its relationship with their quality of life. Total of 308 participants were recruited. The Awareness Knowledge Attitude Questionnaire and the Adult Carer-Quality of Life (AC-QoL) questionnaire were used. The result demonstrates a significant association between caregivers’ knowledge levels and the level of their quality of life. A significant association was identified between two socio-demographic characteristics-marital status and educational level-and level of knowledge. Furthermore, significant associations were found between other socio-demographic characteristics and the level of their quality of life: religion, marital status, educational level and monthly income. The findings of the study indicate that caregivers with high levels of epilepsy-related knowledge experience a moderate quality of life. Therefore, epilepsy support groups for caregivers are important as these would provide the appropriate emotional and practical support needed to improve the quality of live among caregivers.

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Systematic literature review of the humanistic and economic burden of focal epilepsy and primary generalized tonic–clonic seizures in adults

Boccaletti,

Lucas,

Nixon

et al. 2024

Epilepsia Open

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This systematic literature review (SLR) assessed the humanistic and economic burden of focal epilepsy and primary generalized tonic–clonic seizures (PGTCS) in adults to evaluate these domains in both populations and identify evidence gaps to inform future research. A search was conducted on December 7, 2022, using MEDLINE and Embase to identify studies published from 2012 onwards reporting humanistic burden (patient‐reported or caregiver‐reported outcomes or utilities, qualitative evaluations), economic burden (productivity loss, caregiver and societal costs of epilepsy), and sleep‐related outcomes. Of the 2830 citations identified, 136 were included. Most studies were in the focal epilepsy population; very few studies reported outcomes in the PGTCS population. The presence of epilepsy‐specific instruments varied based on the domain evaluated. Epilepsy exerted considerable humanistic and economic burden. Indicators of poor disease control (e.g., high seizure frequency, resistance to anti‐seizure medications, polypharmacy) increased epilepsy burden. Seizure frequency and type, disease severity, and polypharmacy also affected work productivity. Adults with epilepsy, particularly focal epilepsy, reported higher indirect costs, more sick days accrued, and early entry into retirement. Caregivers similarly reported high productivity loss and absenteeism related to caregiving duties. The results of this SLR highlight the high humanistic and economic burden of focal epilepsy and PGTCS, although limited data were available for the PGTCS population. The results include patient‐reported outcome data specific to focal epilepsy and PGTCS, expanding the limited humanistic burden evidence identified in previous reviews, and show the effect of poor disease control on individuals' lives and as a driver of indirect costs.Plain Language SummaryOur systematic literature review identified studies that evaluated the impact of focal epilepsy and primary generalized tonic–clonic seizures on patients and their caregivers. We found that focal epilepsy negatively impacted patients' mental health and sleep and was associated with higher indirect costs and lower work productivity in people with more severe disease. The impact of primary generalized tonic–clonic seizures on patients was rarely reported, and future research is needed.

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Quality of life study for caregivers of people with uncontrolled focal-onset seizures

Cited by 4 publications

References 29 publications

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Caregivers’ Knowledge on Epilepsy and Its Relationship with Quality of Life

Systematic literature review of the humanistic and economic burden of focal epilepsy and primary generalized tonic–clonic seizures in adults

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