Author(s)
Bennett B1, Cooper A2, Fladrowski C3, Evanochko C4, Neary MP5, Vieira J6, Buffa V6, Grant L1, Tritton T7, Kingswood C8
1Adelphi Values Ltd, Bollington, Cheshire, UK, 2Tuberous Sclerosis Association, London, UK, 3European Tuberous Sclerosis Association, Dattein, Germany, 4Tuberous Sclerosis Canada, Barrie, ON, Canada, 5Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, 6Novartis Pharmaceuticals UK Limited, Camberley, Surrey, UK, 7Adelphi Values Ltd, Bollington, CHE, UK, 8St. George's Hospital, London, UK
OBJECTIVES: Patients with tuberous sclerosis complex (TSC) experience a wide range of health impacts including epileptic seizures. Measurement of health state utility values (HSUVs) can be performed to quantify the impact of TSC and generate key inputs for health economic models; such data in the TSC population are currently very limited. The objective was to generate HSUVs for TSC health states, defined by number and type of seizures experienced in the previous week, and to compare with UK normative values (Szende A et al METHODS: This cross-sectional study involved 186 participants (TSC patients=61, caregivers reporting on TSC patients=125) from Europe (patients=51, caregivers=117) and North America (patients=10, caregivers=8) who completed a web-based survey. Participants completed the EQ-5D-3L (self-report version for patients or proxy version 1 for caregivers). RESULTS: Mean patient age was 27.3 years (self-reported: 41.3, caregiver-reported: 20.5); 56% males Most patients (71%) experienced 1-10 seizures in the previous week. The most frequently reported type of seizure was focal: simple partial (50%). Across all participants (combined self-report and caregiver-report), mean HSUV was 0.474. Mean dimension scores and HSUVs were consistently indicative of lower quality of life (QoL) when reported by caregivers for patients than when self-reported by patients (HSUV: 0.351 vs
Conference/Value in Health Info
2018-11, ISPOR Europe 2018, Barcelona, Spain
Value in Health, Vol. 21, S3 (October 2018)
Code
PND123
Topic
Patient-Centered Research
Topic Subcategory
Health State Utilities
Disease
Neurological Disorders
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