PURPOSE: Prevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of Dravet syndrome (DS) in the UK were investigated using primary and secondary care data in this retrospective cohort study.
METHODS: Patients with confirmed DS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987-31/10/2018) using the DS Read Codes (F25G.11 or F25G.00). Probable DS was identified using the International Classification of Diseases-10/Read Code for epilepsy plus stiripentol or potassium bromide prescription. CPRD data were linked to the Hospital Episode Statistics database and Office for National Statistics to calculate HCRU and mortality.
RESULTS: The prevalence of confirmed (n = 32; 1.1/100,000) and probable (n = 22; 0.6/100,000) DS in 2017 was 1.5/100,000. Most patients with DS (confirmed, n = 22/28; probable, n = 8/14) were aged <18 years in 2017. Mean (standard deviation) ASM usage was 5.5 (2.7) in confirmed DS and 7.6 (3.8) in probable DS, over 3.4 (3.5) years and 10.0 (6.2) years of follow-up, respectively. HCRU (per patient-year) was similarly high in patients with confirmed and probable DS; mainly consisting of general practitioner consultations (mean, 4.8-7.9), outpatient visits (5.6-8.3), hospital admissions (0.9-4), and emergency department visits (0.3-2.3). Fewer than five deaths were recorded in patients with confirmed and probable DS.
CONCLUSION: Using linked national healthcare databases, our study showed that the UK prevalence of DS recorded in primary care was low, and most cases were in patients aged <18 years. HCRU and ASM usage were similarly high in confirmed or probable DS.
|組織名||Neurology and Molecular Neuroscience Group, Institute of Life Science, Swansea;University Medical School, Swansea University, Swansea, SA2 8PP, United Kingdom;;Neurology Department, Morriston Hospital, Swansea Bay University Health Board,;Swansea, SA6 6NL, United Kingdom. Electronic address: firstname.lastname@example.org.;Value, Access & HEOR, Commercial Advisory Group, Syneos Health, 41/45 Boulevard;Romain Rolland, 92120 Montrouge, Paris, France.;Evidence Synthesis, Modeling, Communications, Evidera, The Ark, 201 Talgarth;Road, London, W6 8BJ, United Kingdom.;Market Access and Health Economics and Outcomes Research, Jazz Pharmaceuticals,;Inc., 1 Cavendish Place, Marylebone, London, W1G 0QF, United Kingdom.;Muir Maxwell Epilepsy Centre, Child Life and Health, University of Edinburgh,;Royal Hospital for Children and Young People, 50 Little France Crescent,;Edinburgh BioQuarter, Edinburgh, EH16 4TJ, United Kingdom.|