THE BURDEN OF ILLNESS ASSOCIATED WITH SUPER REFRACTORY STATUS EPILEPTICUS (SRSE)
Author(s)
Rycroft C1, Sabar U1, Bonthapally V2, Hunt I3, Erder H4, Meng Y1, Akehurst R1, Strzelczyk A5
1Bresmed Health Solutions, Sheffield, UK, 2Sage Therapeutics, Inc., Cambridge, MA, USA, 3Sage Therapuetics, Inc., Cambridge, MA, USA, 4M. H. Erder Health Economics, Livingston, NJ, USA, 5Goethe University, Frankfurt am Main, Germany
OBJECTIVES: SRSE is a life-threatening form of status epilepticus (SE) that continues or recurs despite multiple therapeutic interventions (first-, second-, and third-line agents). We set out to review information on the epidemiology, health-related quality of life (HRQoL) and economic burden associated with refractory SE (RSE) and SRSE. METHODS: A structured, comprehensive literature review was conducted to identify articles from literature databases, guideline databases, regulatory and health technology assessment agency websites and conference proceedingsData were extracted from eligible articles (reporting on RSE or SRSE and providing data on at least one topic of interest). Summaries of studies meeting predefined criteria are presented. RESULTS: One hundred and sixty articles met the inclusion criteria. Projections or estimates of epidemiology varied by country; incidence of SRSE was 13/100,000 cases/year in the US (1 article) and 3/100,000 cases/year in Germany (1 article). Publications on humanistic burden of SRSE (8 articles) reported that patients with SRSE had a lower HRQoL compared with RSE patients. However, patients with RSE (30 articles) also experienced functional impairment and required considerable care after discharge. Caregiver burden of RSE and SRSE was sparsely reported (SRSE: n=0; RSE: n=2); however, surveys of parent views indicated that parents found it stressful when their child had a RSE episode; however, despite this, their main priority during an RSE episode was to stop their child seizing as quickly as possible. Although economic data were limited (7 articles), the cost of SRSE is considerable; in one study, total annual direct costs of cases identified using the study algorithm as SRSE, accounted for €122.8 million in Germany (2013). CONCLUSIONS: To our knowledge this is the first comprehensive structured literature review on the humanistic and economic burden associated with RSE and SRSE. Our review indicates that the evidence base is limited but the burden of SRSE and RSE is clearly substantial.
Conference/Value in Health Info
2017-05, ISPOR 2017, Boston, MA, USA
Value in Health, Vol. 20, No. 5 (May 2017)
Code
PND15
Topic
Epidemiology & Public Health
Disease
Neurological Disorders, Rare and Orphan Diseases