Methods: An electronic survey system based on the Redcap database
was designed to capture the referral and patient population of PIBD experts in 23 countries. This is part of the study examining rare complications of PIBD within the H2020 funded PIBD SETQuality. PIBD experts are invited to complete an annual survey that collects data regarding the location and type of clinical service, and number of new and current cases of PIBD. It also identifies from where their patients are mainly referred (regional coverage). A key element is the use of the Nomenclature of Territorial Units for Statistics (NUTS3) as defined by Eurostat.1 This structure allows us to combine the col- lected regional PIBD data with the 4600 validated datasets that are
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available in the Eurostat databases. In order to validate the quality of collected data, the source of information for entered data in each survey is also captured. Results: Within one year we have gathered responses from 62 paediatric gastroenterologists in different regions of 16 European countries and Israel. Thus we have reviewed reports from 5 coun- tries with the population covered reaching 16.8 million children Figure 1. Mean total costs (with standard error) per year for the total cohort and per era. and estimated incidence and prevalence through this system. For the UK, the Netherlands (NL), Sweden (SE), Italy (IT) and Israel Mean and median cumulative total costs (CTC) are displayed in (IS), the coverage of the paediatric population reaches 49%, 77%, Table 1. After 2 years from diagnosis and onwards, mean CTC dif- 22%, 35%, and 57%, respectively. Preliminary results are pre- fered significantly between eras. Post-hoc analysis showed significant sented in table. differences between the first and the other two eras, but not between the second and third era (Table 1). Mean costs per year (calculated Country Incidence per 105 Prevalence per 105 over 5-year follow-up) were €2538, €3889, and €4838, respectively, (95% CI) (95% CI) for the consecutive eras. UK 6.5 (5.9–7.4) 28.9 (27.6–30.1) Conclusions: In this population-based study, direct healthcare costs NL 5.6 (4.8–6.5) 28.3 (26.5–30.2) after the first year were higher for each consecutive era, leading to an IS 6.9 (5.7–8.2) 27.3 (25–30) increase in total direct costs of CD over time. Future studies should IT 1.9 (1.5–2.3) 16.7 (15.5–18) investigate whether this increase is compensated by a decrease in SE 7.6 (5.4–10.5) 48.8 (42.8–55.3)
indirect costs (e.g. decreased work disability).
Conclusions: This has shown our ability to obtain incidence and prevalence data of PIBD, compatible with previous data, through studying a very large Pan-European referral population allowing dir- P785 ect comparison between different countries and regions. These data Designing the first pan-European paediatric IBD will allow us to feedback precise figures to our responders in regard database to allow the study of incidence and to their local populations and further examine reasons for reported prevalence of UC, CD, and their rare and severe differences in disease incidence and prevalence between countries complications and regions. *Funding source no.: 668023. P. Kemos1*, M. Aardoom2, F. Ruemmele3, L. de Ridder2, Reference N. Croft1, 1. European Commission, Eurostat, NUTS. Nomenclature of ter- on behalf of the PIBD SETQuality consortium and PIBDnet ritorial units for statistics. Overview. 2017. http://ec.europa.eu/ eurostat/web/nuts, accessed on November 1, 2017. 1 Centre for Immunobiology, Blizard Institute, Barts and the London School of Medicine, Queen Mary University of London, Paediatric Gastroenterology, London, UK, 2Erasmus MC, Sophia Children's Hospital, Paediatric Gastroenterology, Rotterdam, The Netherlands, 3Université Paris Descartes, Sorbonne Paris Cité, P786 APHP, Hopital Necker Enfants Malades, Department of Paediatric The use and escalation of treatments in patients Gastroenterology, Paris, France with inflammatory bowel disease; a 10 years Background: The incidence and prevalence of paediatric-onset follow-up of a Danish population-based inception inflammatory bowel disease (PIBD) and related complications is cur- cohort rently unknown or unclear in several European and non-European B. Lo1*, I. Vind1, F. Bendtsen1, M. Vester-Andersen1,2, J. Burisch1 countries. We designed an electronic survey system, which allows us 1 Copenhagen University Hospital Hvidovre, The Gastro Unit, to collect PIBD denominator data, annually. With this study we aim Medical Division, Hvidovre, Denmark, 2Zealand University to determine the incidence and prevalence of PIBD and its rare and Hospital, Medical Department, Køge, Denmark severe disease or treatment-related complications and reveal import- Background: The long-term treatment strategies and change ant differences between regions, populations and other variables as between medications in Inflammatory bowel disease (IBD) in the age well as trends over time. of biologics has not been well described. We aimed to characterise the treatment strategies in IBD in a well-defined population-based
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