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BackgroundCOVID-19 has impacted on healthcare provision. Anecdotally, investigations for children with inflammatory bowel disease (IBD) have been restricted, resulting in diagnosis with no histological confirmation and potential secondary morbidity. In this study, we detail practice across the UK to assess impact on services and document the impact of the pandemic.MethodsFor the month of April 2020, 20 tertiary paediatric IBD centres were invited to contribute data detailing: (1) diagnosis/management of suspected new patients with IBD; (2) facilities available; (3) ongoing management of IBD; and (4) direct impact of COVID-19 on patients with IBD.ResultsAll centres contributed. Two centres retained routine endoscopy, with three unable to perform even urgent IBD endoscopy. 122 patients were diagnosed with IBD, and 53.3% (n=65) were presumed diagnoses and had not undergone endoscopy with histological confirmation. The most common induction was exclusive enteral nutrition (44.6%). No patients with a presumed rather than confirmed diagnosis were started on anti-tumour necrosis factor (TNF) therapy.Most IBD follow-up appointments were able to occur using phone/webcam or face to face. No biologics/immunomodulators were stopped. All centres were able to continue IBD surgery if required, with 14 procedures occurring across seven centres.ConclusionsDiagnostic IBD practice has been hugely impacted by COVID-19, with >50% of new diagnoses not having endoscopy. To date, therapy and review of known paediatric patients with IBD has continued. Planning and resourcing for recovery is crucial to minimise continued secondary morbidity.

ObjectiveTo determine the diagnostic accuracy of calprotectin to diagnose inflammatory bowel disease (IBD) in children in whom general practitioners (GPs) suspected IBD.DesignProspective observational cohort study of a new calprotectin-based primary care referral pathway.Setting48 GP practices and gastroenterology secondary care services at the Royal Devon and Exeter NHS Foundation Trust in the South-West of England, UK.Patients195 children aged between 4 and 18 years referred on the pathway between January 2014 and August 2017 for investigation of gastrointestinal symptoms were included.InterventionsPrimary-care-driven faecal calprotectin testing. Primary and secondary care records over 12 months from the point of calprotectin testing were used as the reference standard.Main outcome measuresDiagnostic accuracy of calprotectin testing to detect IBD.Results7% (13/195) tested patients were diagnosed with IBD. Using our prespecified cut-off of 100 µg/g, calprotectin had a diagnostic accuracy of 91% (95% CI 86% to 95%) with a sensitivity for distinguishing IBD from non-IBD of 100% (95% CI 75% to 100%), a specificity of 91% (95% CI 85% to 94%), a positive predictive value of 43% (95% CI 25% to 63%) and a negative predictive value of 100% (95% CI 98% to 100%). Calprotectin testing had no effect on the time to diagnosis, but a negative test contributed to saved referrals and was associated with fewer diagnostic tests in secondary care.ConclusionsCalprotectin testing of children with suspected IBD in primary care accurately distinguishes IBD from a functional gut disorder, reduces secondary care referrals and associated diagnostic healthcare utilisation.

A 17-year-old patient with Crohn’s disease underwent intravenous iron infusion (Ferinject [ferric carboxymaltose]) as treatment for iron deficiency anaemia (haemoglobin 103 g/L, ferritin 6 μg/L) as per the British Society of Paediatric Gastroenterology, Hepatology and Nutrition1 guidelines (20 mg/kg, maximum of 1000 mg per single dose). Pain at the cannula site was reported during the infusion, which was immediately stopped, with the cannula removed and resited to continue the infusion. Two days post-infusion a patchy, …

BackgroundBiosimilar infliximab became available in the UK in 2015. Paediatric experience to date on its use is limited. We prospectively evaluated the safety and efficacy of biosimilar infliximab (Remsima) in two paediatric gastroenterology networks in patients with inflammatory bowel disease.MethodsProspective clinical data were collected from laboratory reports, electronic patient records and case notes of 40 patients starting Remsima for the first time. Disease activity scores together with blood and stool biomarkers were used to assess response.ResultsOur data set highlights that Remsima was associated with a significant clinical and biochemical improvement (pConclusionWe found that biosimilar infliximab is as effective as originator infliximab and its use is associated with significant cost savings.

We describe the case of a patient with ongoing weight loss, low mood and previously undisclosed gastrointestinal (GI) symptoms initially diagnosed with an eating disorder and subsequently diagnosed with ulcerative colitis over a year following initial presentation. This patient exhibited disordered eating secondary to the worsening symptoms of undiagnosed inflammatory bowel disease (IBD) and had altered her eating habits to reduce the diarrhoea and rectal bleeding she was experiencing, contributing to significant weight loss.The implications of a delayed diagnosis of IBD or incorrect diagnosis of eating disorder are severe both physically and psychologically. We discuss factors in the assessment of patients which may raise suspicion of organic GI disease such as IBD—an important differential diagnosis in those with non-specific GI symptoms and suspected eating disorder—and highlight baseline investigations which should be performed to ensure a diagnosis of IBD is not missed in these patients.

Over the last few years, many changes have been introduced in the diagnosis and management of paediatric gastrointestinal problems. This review highlights the recent developments inHelicobacter pyloriinfection, eosinophilic oesophagitis, coeliac disease and inflammatory bowel disease.

Background and aimsBiological agents are being increasingly used in the UK for paediatric-onset inflammatory bowel disease (PIBD) despite limited evidence and safety concerns. We evaluated effectiveness and safety in the clinical setting, highlighting drug cost pressures, using our national Scottish PIBD biological registry.MethodsComplete usage of the biological agents, infliximab (IFX) and adalimumab (ADA) for treatment of PIBD (in those aged Results132 children had biological therapy; 24 required both agents; 114 had Crohn's disease (CD), 16 had ulcerative colitis (UC) and 2 had IBD Unclassified (IBDU). 127 children received IFX to induce remission; 61 entered remission, 49 had partial response and 17 had no response. 72 were given maintenance IFX and 23 required dose escalation. 18 had infusion reactions and 27 had adverse events (infections/other adverse events). 29 had ADA to induce remission (28 CD and 1 UC), 24 after IFX; 10 entered remission, 12 had partial response and 7 had no response. All had maintenance; 19 required dose escalation. 12 children overall required hospitalisation due to drug toxicity. No deaths occurred with either IFX or ADA.ConclusionsComplete accrual of the Scottish nationwide ‘real-life’ experience demonstrates moderate effectiveness of anti tumour necrosis factor agents in severe PIBD but duration of effect is limited; significant financial issues (drug cost—need for dose escalation and/or multiple biological usage) and safety issues exist.

It is unclear whether recent therapeutic advances have improved the growth of children with Crohn's disease (CD).To assess the frequency of short stature and poor growth and their relationship to disease course and therapy in children with CD. WHAT IS ALREADY KNOWN ON THIS TOPIC: Growth retardation may occur in children with Crohn's disease (CD). Current therapy for CD in the UK is less likely than previously to involve the use of long-term glucocorticoids.Despite advances in therapy, short stature and slow growth continue to be encountered in children with CD. There is a need for simple and consistent definitions of growth that can identify poor growth in children with chronic disease.The anthropometric and treatment details of 116 children (68 male) with a mean (range) age at diagnosis of 10.8 years (4.9-15.5) and a mean age at maximum follow-up (MF) of 15.4 years (9.4-19.3) were studied retrospectively at diagnosis (T0), at 1 (T1), 2 (T2) and 3 years (T3) after diagnosis and at MF.At T0, mean height SD score (HtSDS) was -0.5 (-3.3 to 2.6) compared to a mid-parental HtSDS of 0.2 (-2.0 to 01.4) (p=0.002). At T1, T2, T3 and MF, mean HtSDS was -0.6 (-4.8 to 7.8), -0.6 (-2.9 to 2.2), -0.7 (-3.6 to 2.5) and -0.5 (-3.5 to 2.9), respectively. Mean Ht velocity (HV) SDS at T1, T2, T3 and MF was -1.4 (-7.4 to 7.4), -0.6 (-7.5 to 6.1), -0.1 (-6.6 to 7.6) and 0.6 (-4.8 to 7.8), respectively (p0.05). In final models, HtSDS was associated negatively with the use of prednisolone (p=0.0001), azathioprine (p=0.0001), methotrexate (p=0.0001) and weight SDS (WtSDS) (p=0.0001). HVSDS was associated positively with age (p=0.0001) and WtSDS (p=0.01). ΔHtSDS was associated negatively with use of prednisolone (p0.02).Although current therapy for CD is associated with improved rate of growth for the first few years, a substantial proportion of children remain short. This study also highlights the need for consistency in describing growth in children with chronic diseases.

Crohn's disease (CD) is rapidly increasing in children so an up to date knowledge of diagnosis, investigation and management is essential. Exclusive enteral nutrition is the first line treatment for active disease. The vast majority of children will need immunosuppressant treatment and around 20% will need treatment with biologics. Recent guidelines have helped make best use of available therapies.

The rapid pace of progress in molecular genetics over the past 15 years--since the seminal description of the polymerase chain reaction--has led to the identification of the genes involved in many single gene disorders. These successes in the laboratory have already led directly to clinical applications in diagnosis, pharmacogenetics, and the development of new therapies. Progress in unravelling the genetics of complex diseases has been less straightforward. However, real excitement has followed the identification of the NOD 2/CARD 15 gene as an important determinant of susceptibility to Crohn's disease.(1,)(2) Not only has this finding provided a proof of principle for the technique of genome-wide scanning in complex disorders, but the discovery also has given real insight into the primary pathophysiology involved in chronic inflammatory bowel disease. The background to this discovery and its implications form the basis for the present article.

Aims To evaluate the outcome of Scottish children with extra hepatic biliary atresia (EHBA) since rationalisation of Kasai services to three English centres in 2002 (The ‘Group A’ centres). Methods All Scottish children with EHBA diagnosed between 2002 and 2009 were identified via the Scottish Society of Paediatric Gastroenterology, Hepatology and Nutrition (SSPGHAN) clinicians. A case-note review was conducted with demographics, presentation and outcome data recorded. These data were compared with historical Scottish data and data published previously by the supraregional liver units. Results 25 patients were identified, of whom 22 were referred for Kasai in the group A centres, and of whom 19 had a Kasai. 2 year transplant-free survival (TFS) was significantly lower in the SSPGHAN 2002–2009 group than the group A centres in (1) (6/18 (33%) vs 36/57 (63%), p=0.023). Conclusions These postrationalisation data are disappointing. The emphasis for care will now focus on improved communication between, primary care, general paediatricians and surgical centres through regional and national managed clinical networks, aiming to improve future outcomes for Scottish children with BA.

Aims Autoimmune diseases (AIDs) affect up to 10% of individuals living in Europe, so are a significant cause of chronic morbidity. High rates of immune-mediated comorbidity and familial clustering suggest that genetic predisposition underlies AI disease susceptibility, yet few clinical studies have defined the prevalence rates of co-morbid AIDs in specific paediatric populations. This study aims to document the occurrence of Juvenile Idiopathic Arthritis (JIA) and other AIDs in a Scotland-wide cohort of paediatric inflammatory bowel disease (PIBD; diagnosed Methods The Paediatric-onset IBD Cohort and Treatment Study (PICTS) is a nationwide Scottish study of incident and prevalent PIBD patients, collecting a wide range of data, including rigorous phenotyping, with continuous long-term follow-up. The PICTS database was interrogated to identify patients enrolled up to 30/06/12 (follow-up to 30/06/14) with a diagnosis of at least one associated AID by last follow-up. Cases believed to be related to use of anti-TNFα treatment were excluded. Results Of 809 patients in the PICTS cohort, 43 had one or more associated AID, an overall co-morbid immune disease rate of 5.3%; 49% (21/43) male. There were 44 AIDs in 43 patients; one patient had dual AIDs (psoriasis [PSOR] and spondyloarthropathy [SPA]) co-existing with IBD. Otherwise, there were 7 cases of JIA, 3 cases of SPA and 9 cases of PSOR. Additionally there were 4 cases of coeliac disease, 2 of thyroiditis and 2 cases of type 1 diabetes. No cases of Systemic Lupus Erythematosus (SLE) were identified. There were 15 cases of autoimmune liver disease (Primary Sclerosing Cholangitis [PSC], Auto-Immune Hepatitis [AIH] and Autoimmune Sclerosing Cholangitis [ASC]) in this cohort, accounting for 35% of all PIBD-associated AID. Conclusion Over 5% of PIBD patients in this large cohort study have associated AIDs. Autoimmune liver disease is the commonest AID in this cohort of PIBD patients, followed by PSOR accounting for 23%; JIA accounted for 16% of PIBD-associated AID.

Background The worldwide incidence of paediatric-onset inflammatory bowel disease (PIBD) is rising, with Scotland having the highest rate in the UK. Scottish PIBD data over the last 40 years has shown a consistent increase, including a 76% rise over 13 years around the millennium (Henderson P et al . IBD 2012;18:999–1005). Aims The aim of this study was to calculate current PIBD incidence rates in Scotland and to determine if the temporal trend of significant increase has been maintained. Methods Historical data from 2003–2008 (cohort 1) was compared to prospective, nationwide data of all incident cases diagnosed in paediatric services (under 16 years of age) from 2009–2013 (cohort 2). Age-sex adjusted incidence rates were calculated using population data from the General Registrar’s Office for Scotland. Cases were classified as Crohn’s disease (CD), ulcerative colitis (UC) or inflammatory bowel disease unclassified (IBDU) and diagnosed according to the Porto criteria. Statistical analysis was performed using Poisson regression. Results A total of 436 patients were diagnosed with PIBD over six years in cohort 1 (265 CD, 115 UC, 56 IBDU) compared to 478 children over five years in cohort 2 (286 CD, 126 UC, 66 IBDU). Median age at diagnosis in cohort 2 (60% males) was 12.3 years, similar to cohort 1 (58% males) at 11.9 years. The adjusted incidence rate increased from 7.8/100,000/year (95% CI 7.1–8.6) in cohort 1 (2003–2008) to 10.4/100,000/year (95% CI 9.6–11.5) in cohort 2 (2009–2013) (p Conclusion There continues to be an ongoing rise in incident PIBD (and both CD and UC) in 2009–13 in this national, population-based study compared to recent historical data, with a further significant rise of 33%. The reasons behind this continued increase remain unclear and further research is needed to elucidate potential factors in aetiopathogenesis.

Aims To evaluate the use of faecal calprotectin (FC) in children with suspected inflammatory bowel disease (IBD) in the previous year, and to establish if the number of negative endoscopies had been minimised without missing any cases of IBD. To assess the use of FC in established paediatric IBD. To analyse the cost benefit of the test. Methods A retrospective analysis of FC measurements carried out between 1 st October 2011 and 30 th September 2012. FC measurements were obtained from the biochemistry department. Following a computerised search of the departmental records the presenting complaint, endoscopy result if applicable, diagnosis of IBD or alternative diagnosis, and follow-up or discharge were recorded for each patient. Patients were divided into those who were scoped based on their FC value and those who were not. Established IBD patients who had a FC test as part of their disease management were treated as a separate group. Results 36 patients (55%) were not scoped. All 36 had at least one symptom indicative of IBD. 25 of these had a FC value of 200µg/g. None of these patients have been diagnosed with IBD. 17 patients were scoped (26%). 3 of these patients were diagnosed with IBD. Median FC for the group that were not scoped was 30µg/g (interquartile range (IQR) 30–760µg/g), compared with 126µg/g (IQR 52 –1,590µg/g) in the group that were scoped. 8 patients with known IBD had a FC test when they became symptomatic and all FC values were consistent with GI inflammation. Overall, there was a 38% cost saving due to 44 unnecessary endoscopies being avoided. Conclusion FC is a valuable test for excluding IBD in patients who present with abdominal pain and diarrhoea. FC can confirm relapse in symptomatic patients known to have IBD. When the test is used in these ways patients avoid an invasive procedure and the hospital is saved the cost of the endoscopy. However, guidelines are required to ensure the correct and appropriate use of this relatively new test.

Aim To review all incident cases of paediatric coeliac disease (CD) in a UK region over the 20 year period from 1990-2009; to observe trends in incidence, symptom presentation, age at diagnosis and the impact of active screening of at-risk groups; and to audit laboratory results at diagnosis for 01/2005-12/2009. Methods We performed a retrospective audit of case notes, pathology databases, endoscopy and electronic patient records for all children under 16 years diagnosed with CD on duodenal biopsy between 01/1990 and 12/2009 in a UK region of 1.25 million population, of whom 233,000 were aged Results 266 biopsy positive children were diagnosed during the 20 year study period with a mean increase in age-sex standardised incidence from 1.76 (95% CI 1.08-2.72) to 11.74 (95% CI 9.82-13.93) per 100,000 aged Conclusions The incidence of paediatric CD has increased seven-fold over the last 20 years in a UK region. Children are older at diagnosis, presenting with fewer GI symptoms, and with iron deficiency anaemia remaining the commonest laboratory abnormality. We suggest that this increase in incidence is largely due to both increased screening of at risk groups and a lower threshold for investigating for CD as a result of greater clinician awareness of the condition9s heterogenic nature. A UK-wide study would be beneficial to identify national trends in incidence and symptomatology.

Introduction The incidence of early-onset inflammatory bowel disease (IBD) is high in Europe and North America with numbers rising in recent decades. An accurate indication of the current incidence and temporal trends experienced by a whole population is useful in understanding possible aetiological factors and is essential for the planning of future specialist healthcare provision. Method This study reports the incidence of early-onset IBD within the Scottish population over a 6-year period (2003–2008), comparing the incidence and demographic attributes to previous figures. Three paediatric gastroenterology networks provide care for all paediatric IBD patients in Scotland. Retrospective data regarding incident cases of IBD diagnosed Results During the study period 430 patients Conclusion The number of Scottish children diagnosed with IBD continues to rise with the rates of IBD and CD rising significantly by 70% and 61%, respectively. Although UC has risen by 25%, this was not significant. This continuing rise has clear implications for the health of Scotland9s children and the local provision of specialist healthcare. A greater understanding of the changing demographic of early-onset IBD may give us clues as to the aetiology of this chronic condition and aid future disease prevention measures.

Introduction A significant proportion of inflammatory bowel disease (IBD) presents in childhood and adolescence, a critical time for growth and development, so timely diagnosis is desirable to ensure patients achieve their growth potential. Our aim was to delineate whether choice of endoscopic investigation may delay diagnosis in paediatric-onset IBD (PIBD). Methods The authors performed a retrospective case note review in a tertiary PIBD centre from 1996–2009. Symptom onset was defined as the length of history of presenting complaint; date of presentation was defined as the first presentation, often to primary care. Date of each referral, to whom, and the investigations carried out by each discipline before either diagnosis or onward referral were recorded. Date of diagnosis is defined as the date of the endoscopy providing definitive histological diagnosis. Statistical analysis was performed with Excel. Results 166 PIBD patients with a median (range) age at diagnosis of 11.5 (2–17) years. Median time from first symptoms to diagnosis was 27.5 weeks (2–445) and from first referral to diagnosis was 14 (0–439) weeks. 23% of patients underwent sigmoidoscopy prior to diagnosis, 12% colonoscopy alone and 67% colonoscopy+upper GI endoscopy (UGIE). 76% of sigmoidoscopies, performed in isolation, were performed by surgeons, whereas 97% of colonoscopy+UGIE were performed by paediatric GI services; sigmoidoscopy diagnosed IBD on 55% of occasions whereas colonoscopy+UGIE diagnosed IBD on 99% of occasions (p=0.0001). Colonoscopy alone was diagnostic on 80% of occasions, inferior to colonoscopy and UGIE (p=0.002). Median time to PIBD diagnosis when sigmoidoscopy was performed prior to diagnosis was significantly longer than for patients who had no sigmoidoscopy performed, at 29.5 (1–402) vs 12 (0–439) weeks (p=0.005). Conclusion Use of sigmoidoscopy as opposed to colonoscopy+UGIE was associated with delayed PIBD diagnosis. We suggest that sigmoidoscopy should be abandoned in the diagnosis of PIBD, and colonoscopy and UGIE is the endoscopic investigation of choice, supporting the “porto criteria” for PIBD diagnosis ( JPGN 2005; 41:1–7).