IBD in children with disease onset before the age of 2 years is frequently unclassifiable into Crohn's disease and ulcerative colitis, particularly treatment resistant, and can be indistinguishable from monogenic diseases with IBD-like phenotype.

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BackgroundImproveCareNow (ICN) is a Quality Improvement (QI) Program established in 2007. ICN uses patient data to drive improvements in the care and health of PIBD patients. It is a network of 96 international centres with over 27 000 PIBD patients, that benchmarks care against agreed targets. We share our 7 year experience in using this QI tool.MethodsAll eligible IBD patient enrolled in the program had their data collected and entered into an electronic database at every clinic visit and ambulatory review. The data consisted of diagnosis, using the Paris classification, growth and nutrition, lab results, medications, physical assessments, disease activity and extra intestinal manifestations. Data from each visit was analysed and reports were generated within 24 hours. Each patient‘s results were stratified and scored weekly, so that individual treatment plans could be instigated. Reports were reviewed on a monthly basis and changes to clinical management were implemented on an individualised basis, adhering to local treatment policy. Monthly QI meetings set and reviewed 90 day goals, enabling the team to strive for better results.ResultsAt present 138 (61 female, mean age 12.6 y) patients are registered in the ICN database. Patients who have transitioned have been removed. Our overall remission rates of 60% in 2011 increased to 72% in 2017, Steroid free remission rates from 50% to 71%, patients off steroids from 60% to 98%, satisfactory nutritional status from 82% to 93%, satisfactory growth status from 92% to 93%. At risk for nutritional failure decreased from 9% to 7%, patients in nutritional failure from 9% to 0%. At the point of joining ICN we did not know patient numbers and did not do any pre-visit planning (PVP), we now have all our IBD patients registered and we do PVPs on each patient before their clinic review, please see Table attached.ConclusionICN has shown to be an excellent tool of improving the quality of care of PIBD patients. Monitoring disease severity and having the ability to provide tailored treatment plans have been achieved, by using this QI tool. Clinics have been streamlined, patient care has been standardised and key outcome measures have significantly improved.

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