Quality of life and level of burden in primary caregivers of patients with epilepsy: Effect of neuropsychiatric comorbidity

Gutierrez-Angel, Ana Maria; Martínez‐Juárez, Iris E.; Hernandez-Vanegas, Laura Elena; Crail-Meléndez, Daniel

doi:10.1016/j.yebeh.2018.01.034

Cited by 36 publications

(45 citation statements)

References 38 publications

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“…Second, all answers were self‐reported and could not be corroborated. Third, a similar study of 151 caregivers reported that their PWEs had an average of 8.3 ± 16.4 seizures per month, which is less than our observed 11.4 seizures in the last month and raises further questions about the generalizability of our findings . If the seizure burden in the PWEs that our respondents care for is higher than what is typically seen, our findings would be an overestimate of the disease burden.…”

Section: Discussioncontrasting

confidence: 64%

“…Third, a similar study of 151 caregivers reported that their PWEs had an average of 8.3 ± 16.4 seizures per month, which is less than our observed 11.4 seizures in the last month and raises further questions about the generalizability of our findings. 30 If the seizure burden in the PWEs that our respondents care for is higher than what is typically seen, our findings would be an overestimate of the disease burden. Fourth, when estimating indirect costs for the caregiver population, we assumed that all of those who were unemployed did not have any productivity losses, when in reality some likely left employment to serve as a caregiver.…”

Section: Discussionmentioning

confidence: 78%

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The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers

et al. 2020

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Objective The burden of caregiving for persons with epilepsy (PWEs) has not been examined previously in the United States. We assessed the clinical impact and direct and indirect economic costs for caregivers of PWEs. Methods An internet survey of 500 caregivers of PWEs was conducted from May to July 2015 using a combination of validated instruments and questions designed specifically for this survey. Caregivers were stratified by PWE age (adult/child) and disease severity (low: 0 vs high: 1 + seizures in the prior month). Annual self‐reported direct and indirect costs were reported per caregiver and extrapolated to all US caregivers. The economic burden of caregiving for PWEs was defined as the difference between costs for caregivers and the general population. Results Caregivers reported that PWEs averaged 11.4 seizures in the prior month. Eighty percent of respondents were female and the average age was 44.3. Since becoming a caregiver, many reported anxiety (52.8%), depression (41.0%), and insomnia (30.8%). Annual mean direct medical costs for caregivers of children with low vs high seizure frequency were $4344 and $10 162, respectively. Costs for caregivers of adult PWEs were $4936 and $8518. Mean indirect costs associated with caregiving for a child with low vs high seizure frequency were $20 529 and $40 137; those for caregivers of an adult were $13 981 and $28 410. The cost estimates are higher vs the general US population; annual per‐person healthcare utilization costs were $2740 and productivity loss costs were $5015. When extrapolating to the US population of PWE caregivers, annual costs exceeded $62 billion vs $14 billion for the general population, resulting in a caregiver burden of nearly $48 billion. Significance The clinical and economic burden of caregivers for PWE were substantial, and greatest for those caring for children with frequent seizures. The impact on caregivers should be considered when estimating the value of interventions that control epilepsy.

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Section: Discussioncontrasting

confidence: 64%

Section: Discussionmentioning

confidence: 78%

The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers

et al. 2020

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“…severity) may affect carer wellbeing, 7 though the evidence is conflicting. 8,14,15 However, its contribution appears less important than psychological and social factors 16 such as practical support, 12,14,17 coping strategies, 9 level of carer education 18 or employment. 19 There is conflicting evidence of the effects of patient QoL and mental health on carers.…”

Section: Introductionmentioning

confidence: 99%

“…19 There is conflicting evidence of the effects of patient QoL and mental health on carers. 9,15,18 There is, to our knowledge, little quantitative research directly addressing the extent to which the carer-patient relationship affects carer wellbeing. However, relationship problems have been found to affect the wellbeing and psychological symptom burden of people with seizure disorders.…”

Section: Introductionmentioning

confidence: 99%

The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

Wardrope

Green

Norman

et al. 2019

Epilepsy & Behavior

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“…Psychiatric disorders are common in epilepsy, occurring in up to one‐third of patients, with depression and anxiety being the most prevalent . Recognizing these psychiatric symptoms using objective parameters is crucial, as these comorbidities adversely influence the disease course, its management, and the patient’s quality of life . Moreover, several antiepileptic drugs exert psychiatric side effects, and thus comorbidities must be taken into consideration for an optimal treatment plan .…”

Section: Introductionmentioning

confidence: 99%

Imaging biomarkers of behavioral impairments: A pilot micro–positron emission tomographic study in a rat electrical post–status epilepticus model

et al. 2018

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Objective:In patients with epilepsy, psychiatric comorbidities can significantly affect the disease course and quality of life. Detecting and recognizing these comorbidities is central in determining an optimal treatment plan. One promising tool in detecting biomarkers for psychiatric comorbidities in epilepsy is positron emission tomography (PET). Methods: Behavioral and biochemical variables were cross-correlated with the results from two μPET scans using the tracers [ 18 F]fluoro-2-deoxy-D-glucose ([ 18 F]FDG) and 2′-methoxyphenyl-(N-2′-pyridinyl)-p-18 F-fluoro-benzamidoethylpiperazine ([ 18 F]MPPF) to explore potential biomarkers for neurobehavioral comorbidities in an electrically induced post-status epilepticus rat model of epilepsy.Results: In rats with epilepsy, μPET analysis revealed a local reduction in hippocampal [ 18 F]FDG uptake, and a local increase in [ 18 F]MPPF binding. These changes exhibited a correlation with burrowing as a "luxury" behavior, social interaction, and anxiety-associated behavioral patterns. Interestingly, hippocampal [ 18 F]FDG uptake did not correlate with spontaneous recurrent seizure activity. Significance: In the electrically induced post-status epilepticus rat model, we demonstrated hippocampal hypometabolism and its correlation with a range of neurobehavioral alterations. These findings require further confirmation in other preclinical models and patients with epilepsy and psychiatric disorders to address the value of [ 18 F]FDG uptake as an imaging biomarker candidate for psychiatric comorbidities in patients as well as for severity assessment in rodent epilepsy models.

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Quality of life and level of burden in primary caregivers of patients with epilepsy: Effect of neuropsychiatric comorbidity

Cited by 36 publications

References 38 publications

The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers

The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers

The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

Imaging biomarkers of behavioral impairments: A pilot micro–positron emission tomographic study in a rat electrical post–status epilepticus model

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