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I8 Kawasaki disease – use of surveillance data to improve management and awareness

Background Kawasaki disease (KD) is the commonest acquired heart disease in the Western world. A British Paediatric Surveillance Unit (BPSU) study was to ascertain national incidence and demographics of KD compared to the last survey 20 years ago. In May 2016, an NHS England patient safety alert (PSA) was announced. Patients with coronary artery aneurysms (CAA+) were to be alerted to the PSA, recalled and to receive a patient specific protocol. In parallel, we wished to determine if admissions with KD increased recently. Methods Those with KD were captured by the survey in the UK and Ireland between 02.2013 and 02.2015. BPSU ‘orange card’ methodology led to anonymous registration by paediatricians who completed a study questionnaire. Ethical and national information governance board approval avoided the need for consent. We also conducted a Freedom of information (FOI) request in order to gain more knowledge about the current situation in the UK. Results 553 children with KD satisfied inclusion criteria, boys:girls was 1.4:1, age range 2 months to 15.5 years. Most had complete disease but 119 had incomplete and 42 atypical disease. In those under 1 year of age, 51% were CAA+. Overall, 355 (68%) were Caucasian, but black African and ethnic Asian were over-represented. Peak incidence was January-March. There was an inverse relationship with population density, being most common in rural areas. Median time to treatment for the 24% of children with CAA +was 10.2 days compared to 6.8 days for those without. The FOI showed that incidence has been rising fast, increasing four-fold over the last 10 years. There has been little response to the PSA, with only 11 Trusts intending to inform patients. Many hospital trusts have no guidelines at all. Conclusions We have made little improvement in managing KD. A marked increase in admissions in the UK coded as KD over the 10 years from 2006–2015 is associated with poor levels of awareness with late diagnosis beyond the recommended 5 days, with frequent CAA and long-term consequences. The survey and FOI will now inform new nationally agreed guidelines and an awareness and educational programme across the UK.