Epilepsy: Quality of Life and Cost of Care

doi:10.1006/ebeh.2000.0049

Epilepsy & Behavior

Volume 1, Issue 2, April 2000, Pages 120-127

https://doi.org/10.1006/ebeh.2000.0049 Get rights and content

Abstract

The primary goal of epilepsy management is to enable the patient to lead a lifestyle as free from the medical and psychosocial complications of seizures as possible. This approach benefits a patient's quality of life as well as his or her family and society (particularly from a cost-of-care perspective). Though treatment with antiepileptic drugs is the primary therapy for epilepsy, physical and psychosocial issues must also be addressed. The indirect costs of epilepsy are related to the patient's ability to function. Since quality of life in epilepsy patients is improved with successful management, the indirect (and possibly the total) costs of epilepsy may decrease as the medical and psychosocial aspects of the disease are successfully managed.

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Cited by (18)

Caregiver-reported outcomes with real-world use of cannabidiol in Lennox-Gastaut syndrome and Dravet syndrome from the BECOME survey
2024, Epilepsy Research
Plant-derived highly purified cannabidiol (CBD) reduced the frequency of seizures associated with Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) and improved the overall condition of patients in placebo-controlled phase 3 clinical trials. Anecdotal reports also suggest a positive effect on nonseizure outcomes. In this study, we aimed to identify, through a caregiver survey which nonseizure outcomes were most likely to change in these patients.
The BEhavior, COgnition, and More with Epidiolex® (BECOME) was a 20-minute, cross-sectional, online survey that was developed with extensive input from caregivers, healthcare professionals, and epilepsy researchers, and was based on questions from validated measures and previously published caregiver reports. US-based caregivers (from Jazz Pharmaceuticals patient/caregiver database) of people with LGS or DS who were treated with CBD (Epidiolex®, 100 mg/mL oral solution) for ≥3 months were asked to compare the past month to the period before CBD initiation and rate their impression of changes using symmetrical Likert scales.
A total of 498 caregivers (97% parents) of patients with LGS (80%) or DS (20%) completed the survey. Mean (range) age of patients was 16 (1−73) years, and 52% were male. Patients were taking a median CBD dose of 14 mg/kg/d and median 4 concomitant antiseizure medications. A large proportion of respondents reported improvements in ≥1 survey question for all nonseizure-related domains: alertness, cognition, and executive function (85%); emotional functioning (82%); language and communication (79% in nonverbal patients and 74% in verbal); activities of daily living (51%); sleep (51%); and physical functioning (46%). Respondents reported improvements in seizure-related domains, including overall seizure frequency (85%), overall seizure severity (76%), seizure-free days per week for ≥1 seizure type (67%), and seizure freedom during the past month (16%). The majority of respondents who reported reduction in seizure frequency also reported improvements in nonseizure outcomes domains (51–80%). However, improvements in nonseizure outcomes (18–56%) were also reported in patients who either had no change or worsening of seizure frequency.
This survey characterized and quantified caregiver impression of changes in the seizure and nonseizure outcomes in patients taking add-on CBD treatment. Overall, 93% of caregivers reported planning to continue CBD treatment, primarily because of reduced seizure burden but also because of improvements in nonseizure-related outcomes. Despite the limitations that are associated with a retrospective survey-based study design, these results support further evaluation of the effect of CBD treatment on nonseizure outcomes among patients with LGS or DS.
Topiramate on the quality of life in childhood epilepsy
2011, Brain and Development
Citation Excerpt :
The primary goals of epilepsy treatment are to enhance the patient’s quality of life (QOL) and to control seizures. Comprehensive care should go beyond simply trying to control seizures while minimizing adverse drug reactions [3,4]. Therefore, there has been a trend away from formal cognitive tests and towards attempts to evaluate HRQOL.
This study evaluated the effect of topiramate (TPM) on the quality of life (QOL) in childhood epilepsy, using the Korean quality of life in childhood epilepsy (K-QOLCE) questionnaire. An open label, prospective, observational study of the families of 664 children with epilepsy from 41 centers was conducted. The parents completed the K-QOLCE at the baseline visit and again 6 months after starting TPM treatment. The parents reported the seizure frequency at both assessment dates. Statistically significant improvements in all K-QOLCE domains except social functioning were found at 6 months after starting TPM treatment from the baseline-scores (P < 0.05). However, improved QOL scores were not dependent on the reduction in seizure frequency. TPM significantly improved QOL in children with epilepsy, suggesting its potential clinical benefits.
Factors associated with generic and disease-specific quality of life in epilepsy
2011, Biomedical and Environmental Sciences
To investigate the association between quality of life (QOL) and sociodemographic factors, clinical seizure factors, depression and anxiety in patients suffering from epilepsy.
We examined 141 consecutive patients with epilepsy (mean age 25.8±9.6, 61.7% male). All patients completed the Self-Rating Depression Scale, Self-Rating Anxiety Scale, WHOQOL-BREF and QOLIE-31(Chinese version). Multiple linear regression analyses were applied to investigate factors impact on QOL.
The results revealed that scores on two domains of the WHOQOL-BREF (i.e., physical and psychological domains, P<0.05) were significantly lower in the epilepsy group compared with the control group. Multiple regression analyses showed that anxiety, depression and course explained approximately 40% of the variance in patients' QOL. Anxiety was consistently the strongest predictor of lower scores on almost all QOL domains. In addition, the severity of depressive symptoms was significantly associated with lower scores across many QOL domains.
Our findings suggest that QOLIE scores might be substantially affected by the presence and severity of anxiety symptoms and, to a lesser degree, of depressive symptoms and prolonged course of illness. In contrast, clinical seizure variables had a weaker association with QOL. Healthcare professionals should be aware of the significance of patients' emotional state and of the role it plays in their QOL.
Driving cost factors in adult outpatients with refractory epilepsy: A daily clinical practice in clinics of neurology in Spain
2009, Epilepsy Research
To explore the association between patient-reported-outcomes measurements and costs in adult outpatients with drug refractory epilepsy (DRE) in Spain.
Secondary analysis of a cross-sectional study to determine resources utilization and related costs of refractory epilepsy in Spain (LINCE study). Consecutive adult outpatients fulfilling criteria for DRE were analyzed. Health-related quality of life (HRQoL), anxiety and depression, self-perceived health status and patient's satisfaction with treatment were assessed respectively by QOLIE-10, HAD scales, EQ-5D-VAS and SATMED-Q questionnaire. Costs were estimated from public tariffs computing healthcare and non-healthcare resources use in the year 2005.
Seven hundred sixty two consecutive patients (728 (95.5%) valuables; 50.8% males, 40.5 ± 13.5 years) were analyzed. Severe levels of anxiety and depression were both associated with higher costs: from a mean yearly total cost of €6291 ± 7748 (no anxiety) to €10325.8 ± 9900.8 (severe), p < 0.0012 and from €5983.5 ± 6726.1 (no depression) to €12691.4 ± 11745.9 (severe), p < 0.0001. Total yearly cost was inversely associated with HRQoL, self-perceived health status and satisfaction with treatment: from €11517.3 ± 11449.2 to €5430.2 ± 7776.6, first and tenth QOLIE-10 decile intervals, respectively, from €11494 ± 11668 to 5334.3 ± 7606, first and tenth VAS decile intervals, respectively, and from €9762.6 ± 9956.6 to €4746.4 ± 5616.7, first and tenth SATMED-Q decile intervals, respectively, p < 0.0001.
Higher costs of refractory epilepsy were associated with poorer patient-reported-outcomes scores. These findings may be of interest for both health decision makers and clinicians when evaluating the resources devoted to epilepsy.
Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians
2008, Epilepsy and Behavior
Citation Excerpt :
Studies regarding adherence have found four primary factors associated with medication non-adherence: patient-related factors (e.g., socio-economic characteristics, and perceptions and beliefs), illness-related factors (e.g., severity of illness and frequency of symptoms), medication-related factors (e.g., number of daily doses, efficacy, and side effects), and physician-related factors (e.g., patient-physician relationship) [11–15]. Research regarding patient adherence to AEDs has focused largely on the impact of the patient-physician relationship on adherence and potential education programs intended to improve adherence [11,16–18]. Findings suggest that patients tend to be more adherent when physicians have open dialogue regarding epilepsy and its treatments [16–19] and when patients are comfortable speaking with their physician [11].
Non-adherence to epilepsy medications can interfere with treatment and may adversely affect clinical outcomes, although few studies have examined this relationship. This study assessed barriers and drivers to adherence, its impact on quality of life, and the importance of the patient–physician relationship to adherence. Two cross-sectional online surveys were conducted among 408 adult patients with epilepsy and 175 neurologists who treat epilepsy patients. Twenty-nine percent of patients self-reported being non-adherent to antiepileptic medications in the prior month. Non-adherence was found to be associated with reduced seizure control, lowered quality of life, decreased productivity, seizure-related job loss, and seizure-related motor vehicle accidents. Patient-oriented epilepsy treatment programs and clear communication strategies to promote self-management and patients’ understanding of epilepsy are essential to maximizing treatment and quality of life outcomes while also minimizing economic costs.
Seizure Disorders (Epilepsy)
2008, Massachusetts General Hospital Comprehensive Clinical Psychiatry

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ReviewEpilepsy: Quality of Life and Cost of Care

Abstract

Lancet

J Epilepsy

Neurol Clin

Epilepsy Res

Seizure

Int J Psychophysiol

Epilepsy Res

Seizure

Epilepsy Res

Seizure

Seizure

Epilepsy Res

Epilepsy Res

Total patient care in epilepsy

Epilepsia

Advances in the assessment of refractory epilepsy

Epilepsia

Relationship between seizure frequency and costs and quality of life of outpatients with partial epilepsy in France, Germany, and the United Kingdom

Epilepsia

Epilepsy: Frequency, causes and consequences

Pregnancy and epilepsy

Epilepsia

A survey of epileptic disorders in southwest France: seizures in elderly patients

Ann Neurol

Seizure disorders: the changes with age

Epilepsia

Epilepsia

Update in the treatment of epilepsy

Compr Ther

The prognosis for seizure control in newly diagnosed epilepsy

N Engl J Med

The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study

Epilepsia

A comparison of valproate with carbamazepine for the treatment of complex partial seizures and secondarily generalized tonic–clonic seizures in adults

N Engl J Med

Comparison of carbamazepine, phenobarbital, phenytoin, and primidone in partial and secondarily generalized tonic–clonic seizures

N Engl J Med

How to get patients with epilepsy to take their medication: the problem of noncompliance

Postgrad Med

Current issues in the management of epilepsy: the impact of frequent seizures on cost of illness, quality of life, and mortality

Epilepsia

Sepulveda Epilepsy Education: the efficacy of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy

Epilepsia

Patients' experiences of and satisfaction with care for their epilepsy

Epilepsia

Epilepsy in developing countries

Transcult Psychiatr Res Rev

Epilepsy self-management: partial replication and extension

Res Nurs Health

Effects of progressive relaxation on epilepsy: analysis of a series of cases

Psychol Rep

Behavioural and cognitive–behavioural treatments for epilepsy: a progress review

Br J Clin Psychol

Health education for self-management by people with epilepsy

J Neurosci Nurs

Seizure as a cause of fracture

Neurology

Review
Epilepsy: Quality of Life and Cost of Care