Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: Literature review

Gallop, Katy; Wild, D; Nixon, Annabel; Verdian, L; Cramer, Joyce A.

doi:10.1016/j.seizure.2009.06.005

Cited by 45 publications

(44 citation statements)

References 43 publications

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“…74 Albeit limited, the evidence indicates a substantial caregiver burden across multiple areas, including physical, social, and psychological domains. 75 Physically, parents report chronic fatigue and sleep deprivation as a consequence of their caring duties. 76 The responsibility of providing care for individuals with such complex needs is substantial, and even the most vigilant of families seem unable to prevent injuries from occurring; consequently, the pool of friends and extended family willing to provide respite care is diminished.…”

Section: Social Policy: Supporting Familymentioning

confidence: 99%

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

et al. 2016

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SummaryThe management and needs of people with intellectual disability (ID) and epilepsy are well evidenced; less so, the comorbidity of behavioral disorder in this population. “Behavioral disorder” is defined as behaviors that are difficult or disruptive, including stereotypes, difficult or disruptive behavior, aggressive behavior toward other people, behaviors that lead to injury to self or others, and destruction of property. These have an important link to emotional disturbance. This report, produced by the Intellectual Disability Task Force of the Neuropsychiatric Commission of the ILAE, aims to provide a brief review of some key areas of concern regarding behavioral disorder among this population and proposes a range of research and clinical practice recommendations generated by task force members. The areas covered in this report were identified by experts in the field as being of specific relevance to the broad epilepsy community when considering behavioral disorder in persons with epilepsy and ID; they are not intended to be exhaustive. The practice recommendations are based on the authors’ review of the limited research in this field combined with their experience supporting this population. These points are not graded but can be seen as expert opinion guiding future research and clinical practice.

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Section: Social Policy: Supporting Familymentioning

confidence: 99%

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

et al. 2016

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“…Cognitive impairment is seen in 75–95% of patients five years after condition onset, and 90% will eventually become intellectually disabled [5,6]. Additionally, LGS has a significant impact on the health-related quality of life of not only the patient but also their caregiver [7]. …”

Section: Introductionmentioning

confidence: 99%

Use and cost comparison of clobazam to other antiepileptic drugs for treatment of Lennox-Gastaut syndrome

François

Stern

Ogbonnaya

et al. 2017

Journal of Market Access & Health Policy

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Background: Lennox-Gastaut syndrome (LGS) is a severe form of childhood-onset epilepsy associated with serious injuries due to frequent and severe seizures. Of the antiepileptic drugs (AEDs) approved for LGS, clobazam is a more recent market entrant, having been approved in October 2011. Recent AED budget impact and cost-effectiveness analyses for LGS suggest that adding clobazam to a health plan formulary may result in decreased medical costs; however, research on clinical and economic outcomes and treatment patterns with these AED treatments in LGS is limited.Objectives: To compare the baseline characteristics and treatment patterns of new initiators of clobazam and other AEDs among LGS patients and compare healthcare utilization and costs before and after clobazam initiation among LGS patients.Methods: A retrospective study of probable LGS patients was conducted using the MarketScan® Commercial, Medicare Supplemental, and Medicaid databases (10/1/2010-3/31/2014).Results: In the Commercial/Medicare Supplemental population, clobazam users were younger, had fewer comorbidities, and more prior AED use than non-clobazam users. In the 12 months pre-treatment initiation, clobazam users had significantly more seizure-related inpatient stays and outpatient visits and higher total seizure-related (P < 0.001) and all-cause (P < 0.001) costs than non-clobazam users. Among clobazam users, when compared to the 12 months pre-clobazam initiation, seizure-related medical utilization and costs were lower in the 12 months post-clobazam initiation (P = 0.004). Total all-cause (P < 0.001) and seizure-related (P = 0.029) costs increased post-clobazam initiation mainly due to the increase in outpatient pharmacy costs. Similar results were observed in the Medicaid population.Conclusions: Baseline results suggest a prescribing preference for clobazam in severe LGS patients. Clobazam users had a reduction in seizure-related medical utilization and costs after clobazam initiation. The improvement in medical costs mostly offset the higher prescription costs following clobazam initiation.

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“…6 Together, the physical, cognitive, behavioral, and social challenges of LGS have a substantial negative impact on patients' quality of life and present a significant burden to their caregivers. 7 By adulthood, most LGS patients continue to require assistance and are unable to live independently. 4,8 Budget Impact Analysis of Antiepileptic Drugs for Lennox-Gastaut Syndrome…”

mentioning

confidence: 99%

Budget Impact Analysis of Antiepileptic Drugs for Lennox-Gastaut Syndrome

Skornicki¹,

Clements²,

O’Sullivan³

2014

JMCP

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BACKGROUND: In October 2011, clobazam was FDA-approved for adjunctive treatment of seizures associated with Lennox-Gastaut syndrome (LGS), a debilitating childhood epilepsy characterized by drop attacks, for patients 2 years and older.OBJECTIVE: To assess the budget impact of adding clobazam to an antiepileptic drug (AED) portfolio containing topiramate, lamotrigine, and rufinamide in a hypothetical, 100,000-member commercially insured health plan.METHODS: Patient characteristics and AED efficacy (decrease in dropseizure frequency) were modeled with clinical data. Medical costs were derived from administrative claims data from a large U.S. managed health plan, with the assumption that 2.3% of drop seizures required medical care. Two-year budget impact was measured. Results were expressed as the overall difference in costs (medical and pharmacy) to a health plan and cost per member per month (PMPM) after addition of clobazam. Analyses of alternative scenarios were performed.RESULTS: With the assumption that 0.04% of the plan population had LGS, adding clobazam to the formulary resulted in cost savings of $98,059 in year 1 and $131,690 in year 2 (savings of $0.08 and $0.11 PMPM, respectively). Analyses of alternative scenarios with lower seizure rates upon discontinuation or greater long-term efficacy for lamotrigine and topiramate did not substantially alter conclusions. The assumption that fewer drop seizures required medical care resulted in a savings of approximately $5,000 per year with clobazam, which suggested that medically attended drop seizures drive costs.CONCLUSIONS: Medically attended drop seizures are a major cost driver for LGS patients. Adding clobazam to a health plan formulary can have a positive overall budget impact through decreased medical costs associated with drop seizures.

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Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: Literature review

Cited by 45 publications

References 43 publications

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

Use and cost comparison of clobazam to other antiepileptic drugs for treatment of Lennox-Gastaut syndrome

Budget Impact Analysis of Antiepileptic Drugs for Lennox-Gastaut Syndrome

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