Analysis of direct, indirect, and intangible costs of epilepsy

Pato, A. Pato; Pérez, E. Cebrián; Hernando, I; González, J.R. Lorenzo; Constenla, I. Rodríguez; Sampedro, Francisco Gude

doi:10.1016/s2173-5808(11)70006-2

Cited by 7 publications

(2 citation statements)

References 33 publications

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“…This evidence has different potential explanations. Cultural interpretation can contribute to the perception of seizures as stigma and to the attribution of an overestimated severity. Patients from developing countries may be more likely to have experienced healthcare systems characterized by longer delays before accessing modern treatments, reduced AED choice and accessibility, and limited human and technical resources for epilepsy.…”

Section: Discussionmentioning

confidence: 99%

Emergency room access for recurring seizures: when and why

Balestrini

Cagnetti

Foschi

et al. 2013

Euro J of Neurology

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Section: Discussionmentioning

confidence: 99%

Emergency room access for recurring seizures: when and why

Balestrini

Cagnetti

Foschi

et al. 2013

Euro J of Neurology

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“…While epilepsy is the fourth most common neurological condition, studies investigating the characteristics and burden of medically refractory epilepsy patients who suffer from frequent seizures are scarce, with most studies focusing on the pediatric population. Although previous studies have measured the HRQoL of adults with medically refractory epilepsy or the socioeconomic impact of this disease, only a few studies have assessed these issues jointly ( 11 – 14 ). Moreover, these studies often measured HRQoL using disease-specific rather than generic instruments, hampering the comparability of outcomes with other patient populations and their use in economic evaluations.…”

Section: Introductionmentioning

confidence: 99%

Burden of illness in people with medically refractory epilepsy who suffer from daily to weekly seizures: 12-month follow-up of participants in the EPISODE study

et al. 2022

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BackgroundA small group of people with epilepsy suffers from frequent seizures despite the available pharmacological and non-pharmacological interventions. The impact of epilepsy on these people extends beyond health-related quality of life (HRQoL), impacting a person's broader well-being and ability to participate in society. This study describes the burden of medically refractory epilepsy in people who suffer from daily to weekly seizures, in terms of HRQoL, well-being, and societal costs.MethodsData from the EPISODE study on (cost-) effectiveness of seizure dogs for adults with severe medically refractory epilepsy were used, collected in 25 patients during the first 12 months before they were partnered with a certified seizure dog. Data comprised seizure diaries covering 365 days and five three-monthly surveys, including the EQ-5D-5L, QOLIE-31-P, and ICECAP-A to measure HRQoL and well-being. A societal perspective was applied to estimate costs using the iMCQ and iPCQ questionnaires about healthcare use, informal care, and productivity losses.ResultsDaily seizure frequency and survey data were collected in 25 patients. A minimum of 114 observations was available for each instrument included in the survey. A total of 80% of participants experienced seizures on three or more days per week, with a median ranging from 1 to 17 seizures per seizure day. The mean EQ-5D-5L utility score was 0.682 (SD 0.235), which is considerably lower than the age-adjusted general population average. The mean QOLIE-31-P and ICECAP-A scores were 55.8 (SD 14.0) and 0.746 (SD 0.172), respectively. The average annual total cost amounted to €39,956 (range €3,804–€132,64). Informal care accounted for the largest share of costs (50%); those who received informal care reported, on average, 26 h per week (SD 30).ConclusionsSevere medically refractory epilepsy is associated with a considerable burden of illness at the patient and societal level. People with this condition have significantly reduced HRQoL and well-being and are limited in their ability to work while having substantial medical costs and a strong dependency on informal care.

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Process evaluation of a multi-component self-management intervention for adults with epilepsy (ZMILE study)

Leenen

Wijnen

Haastregt

et al. 2017

Epilepsy & Behavior

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This process evaluation revealed that the MCI was largely performed according to protocol, attendance rate was high, and participants and facilitators had, on the whole, a favourable opinion about the MCI, and would recommend it to others with epilepsy and their relatives. Overall, the adherence of patients and relatives was high. The MCI is considered feasible according to patients, relatives and facilitators. Implementation is recommended if the intervention proves to be effective.

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Analysis of direct, indirect, and intangible costs of epilepsy

Cited by 7 publications

References 33 publications

Emergency room access for recurring seizures: when and why

Emergency room access for recurring seizures: when and why

Burden of illness in people with medically refractory epilepsy who suffer from daily to weekly seizures: 12-month follow-up of participants in the EPISODE study

Process evaluation of a multi-component self-management intervention for adults with epilepsy (ZMILE study)

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