The use of ICD codes to identify IBD subtypes and phenotypes of the Montreal classification in the Swedish National Patient Register

Abstract

Introduction: Whether data on International Classification of Diseases (ICD)-codes from the Swedish National Patient Register (NPR) correctly correspond to subtypes of inflammatory bowel disease (IBD) and phenotypes of the Montreal classification scheme among patients with prevalent disease is unknown.

Materials and methods: We obtained information on IBD subtypes and phenotypes from the medical records of 1403 patients with known IBD who underwent biological treatment at ten Swedish hospitals and retrieved information on their IBD-associated diagnostic codes from the NPR. We used previously described algorithms to define IBD subtypes and phenotypes. Finally, we compared these register-generated subtypes and phenotypes with the corresponding information from the medical records and calculated positive predictive values (PPV) with 95% confidence intervals.

Results: Among patients with clinically confirmed disease and diagnostic listings of IBD in the NPR (N?=?1401), the PPV was 97 (96–99)% for Crohn’s disease, 98 (97–100)% for ulcerative colitis, and 8 (4–11)% for IBD-unclassified. The overall accuracy for age at diagnosis was 95% (when defined as A1, A2, or A3). Examining the validity of codes representing disease phenotype, the PPV was 36 (32–40)% for colonic Crohn’s disease (L2), 61 (56–65)% for non-stricturing/non-penetrating Crohn’s disease behaviour (B1) and 83 (78–87)% for perianal disease. Correspondingly, the PPV was 80 (71–89)% for proctitis (E1)/left-sided colitis (E2) in ulcerative colitis.

Conclusions: Among people with known IBD, the NPR is a reliable source of data to classify most subtypes of prevalent IBD, even though misclassification commonly occurred in Crohn’s disease location and behaviour and also among IBD-unclassified patients.     

Preoperative use of anti-TNF therapy and postoperative complications in inflammatory bowel diseases: A meta-analysis

Background and aimsAbout one-third of inflammatory bowel disease (IBD) patients still require surgery. A growing number of them receive anti-tumor necrosis factor (TNF) therapy before surgery. The present meta-analysis studied the risk of postoperative complications in IBD patients treated with anti-TNF.MethodsMEDLINE was searched (up to January 2012) to identify observational studies reporting the prevalence of postoperative complications in IBD patients. The prevalence of overall, infectious, and non-infectious postoperative complications was extracted for all studies, and according to preoperative anti-TNF treatment where reported. Pooled prevalence, as well as odds ratios (ORs), with 95% confidence intervals (CIs) was calculated.ResultsThe search identified 86 citations. Twenty-one studies, containing 4251 subjects, reported the prevalence of postoperative complications according to preoperative anti-TNF treatment. Pooled prevalence of any postoperative complication was 21%, 35%, and 26% in Crohn's disease (CD), ulcerative colitis (UC) or inflammatory bowel disease unspecified (IBD-U) and IBD, respectively. The prevalence of any postoperative complication was increased in IBD patients who underwent preoperative anti-TNF therapy (OR: 1.25; 95% CI: 1.02–1.53). Pooled prevalence of infectious postoperative complications was 16%, 17%, and 15% in CD, UC/IBD-U and IBD, respectively. The prevalence of infectious postoperative complications was increased in CD patients who underwent preoperative anti-TNF therapy (OR: 1.45; 95% CI: 1.03–2.05). The confounding effect of concomitant therapies could not be studied.ConclusionsPreoperative anti-TNF use slightly increases the occurrence of overall postoperative complications in IBD patients, and particularly infectious complications in CD patients. Postoperative complications are not increased in UC.     

Clinical status,psychosocial impairments,medical treatment and health care costs for patients with inflammatory bowel disease (IBD) in Germany: An online IBD registry

BackgroundThe aim of this cross-sectional study was to establish an online inflammatory bowel disease (IBD) registry for a first picture of the situation of IBD outpatients' treatment in Germany.MethodsBetween March 2006 and July 2007 IBD outpatients from 24 gastroenterological specialist practices and two hospitals in Germany were enrolled in an Internet-based registry to evaluate the outpatients' clinical status, psychological impairments, provided health care, as well as medical treatment and medication costs.Results1032 IBD patients (ulcerative colitis/UC: 519; Crohn's disease/CD: 511; indeterminate colitis: 2) were enrolled in the study (age: 43 ± 14 years/M ± SD). Disease duration of all patients averaged 10 ± 8.5 years. In 519 UC-patients (49% male; 33% pancolitis), 66% were in remission as were 55% of CD patients (37 % male; 41 % active smokers). Associated with higher rates of disease activity (CDAI ≥ 150; CAI > 4) were corticosteroids (CD, UC), topical medication (UC), relevant reported depressive symptoms (15%; 6-31%) and impairments in sexuality (21%; 9-42%). Relevant medication groups prescribed were oral aminosalicylates (UC: 70%; CD: 47%); immunosuppressive therapy - mostly azathioprine/6 MP (CD: 47%; UC: 26%), and Infliximab (CD: 8%; UC: 3%).Strongly associated with their clinical disease activity in UC as well as CD patients, 15% (6–31%) reported relevant depressive symptoms and 21% (9–42%) relevant impairments in sexuality.ConclusionsThe registry constitutes a large complemental database for the patient population in Germany. About one third of the IBD patients were not in clinical remission (CDAI ≥ 150/CAI > 4) (CD: 45%; UC: 27%), although high rates of immunosuppressive drugs (CD: 47%; UC 26%) were administered. This study shows a large burden of active disease associated with an unexpectedly high (co)morbidity and high psychosocial impairments, indicating a reduced health state in IBD patients.     

Crohn's-like clinical and pathological manifestations of giant inflammatory polyposis in IBD: A potential diagnostic pitfall

Background & aimsGiant inflammatory polyposis (GIP), characterized by mass-like agglomerations of inflammatory polyps, is a rare complication of inflammatory bowel disease (IBD). We reviewed a series of cases of GIP to determine its diagnostic impact on the clinical and pathologic distinction between ulcerative colitis (UC) and colonic Crohn's disease (CD).MethodsAll colons with GIP resected over a 13-year period were identified prospectively and the corresponding clinical and pathologic records were reviewed.ResultsTwelve cases of GIP were identified, accounting for 0.8% of colectomies for IBD during the same time interval. Preoperatively, 6 (50%) patients were diagnosed with UC, 2 (17%) with CD and 4 (33%) with indeterminate colitis (IC). Postoperatively, 6 of the diagnoses (50%) were revised based on strict histopathologic criteria: all 4 diagnoses of IC to UC, one diagnosis of CD to UC, and one diagnosis of UC to CD, for a total of 10 diagnoses of UC (83%) and two of CD (17%). Significantly, 7 of 10 cases with postoperative diagnoses of UC (70%) had Crohn's-like transmural inflammation exclusively within the polyposis segments attributed to fecal entrapment and stasis and accounting for the Crohn's-like clinical complications in these cases.ConclusionsThis case series of GIP, the largest reported from a single center, highlights the high rate of Crohn's-like clinical and pathological manifestations of GIP and their potential to confound the accurate classification of patients with IBD. A diagnosis of UC should not be amended to CD based on the findings of the polyposis segment alone.     

Long-term effectiveness of vedolizumab in inflammatory bowel disease: a national study based on the Swedish National Quality Registry for Inflammatory Bowel Disease (SWIBREG)

Objectives: Clinical trials have demonstrated the efficacy of vedolizumab in inflammatory bowel disease (IBD). However, these findings may not reflect the clinical practice. Therefore, we aimed to describe a vedolizumab-treated patient population and assess long-term effectiveness.

Materials and methods: Patients initiating vedolizumab between 1 June 2014 and 30 May 2015 were identified through the Swedish National Quality Registry for IBD. Prospectively collected data on treatment and disease activity were extracted. Clinical remission was defined as Patient Harvey Bradshaw index?<5 in Crohn’s disease (CD) and Patient Simple Clinical Colitis Activity index?<3 in ulcerative colitis (UC).

Results: Two-hundred forty-six patients (147?CD, 92 UC and 7 IBD-Unclassified) were included. On study entry, 86% had failed TNF-antagonist and 48% of the CD patients had undergone?≥1 surgical resection. After a median follow-up of 17 (IQR: 14–20) months, 142 (58%) patients remained on vedolizumab. In total, 54% of the CD- and 64% of the UC patients were in clinical remission at the end of follow-up, with the clinical activity decreasing (p?<?.0001 in both groups). Faecal-calprotectin decreased in CD (p?<?.0001) and in UC (p?=?.001), whereas CRP decreased in CD (p?=?.002) but not in UC (p?=?.11). Previous anti-TNF exposure (adjusted HR: 4.03; 95% CI: 0.96–16.75) and elevated CRP at baseline (adjusted HR: 2.22; 95% CI: 1.10–4.35) seemed to be associated with discontinuation because of lack of response. Female sex was associated with termination because of intolerance (adjusted HR: 2.75; 95% CI: 1.16–6.48).

Conclusion: Vedolizumab-treated patients represent a treatment-refractory group. A long-term effect can be achieved, even beyond 1 year of treatment.     

Epidemiological trends of pediatric IBD in Italy: A 10-year analysis of the Italian society of pediatric gastroenterology,hepatology and nutrition registry

IntroductionThe present study aimed at evaluating Italian epidemiological trends of pediatric inflammatory bowel diseases (IBD) over the period 2009–2018.Materials and methodsData from 1969 patients enrolled in the Italian Society of Pediatric Gastroenterology, Hepatology and Nutrition Registry, by 49 pediatric IBD centers throughout the country, were analyzed, comparing three different time intervals (2009–2012, 2013–2015, 2016–2018).ResultsThe number of new IBD diagnoses ranged from 175 to 219 per year, evenly distributed over the examined period of time. From 2009 to 2018, the minimal incidence ranged from 1.59 to 2.04 /10⁵ inhabitants aged < 18 years, with an overall slight predominance of ulcerative colitis (UC) over Crohn's disease (CD) (ratio: 1.1). Mean diagnostic delay was 6.8 months for CD and 4.1 months for UC, with a significant reduction for CD when comparing the three-time intervals (p =0.008). The most frequent disease locations according to the Paris classification were ileocolonic for CD (41.3%) and pancolitis for UC (54.6%).ConclusionsThe minimal incidence rate in Italy seems to have stabilized over the last two decades, even if it has increased when compared to previous reports. UC is still slightly more prevalent than CD in our country. Diagnostic delay significantly decreased for CD, reflecting an improved diagnostic capacity.     

Microscopic colitis in patients with ulcerative colitis or Crohn’s disease: a retrospective observational study and review of the literature

Objectives: Onset of microscopic colitis (MC) in patients with ulcerative colitis (UC) or Crohn’s disease (CD), or vice versa, has been reported occasionally but the subject is not well described. We therefore report a retrospective observational study of such patients and review the literature.

Methods: Forty-six Swedish gastroenterology clinics were contacted about patients with diagnoses of both inflammatory bowel disease (IBD) and MC. Publications were searched on PubMed.

Results: We identified 31 patients with onset of MC after a median (range) of 20 (2–52) years after diagnosis of IBD, or vice versa; 21 UC patients developed collagenous colitis (CC) (n?=?16) or lymphocytic colitis (LC) (n?=?5); nine CD patients developed CC (n?=?5) or LC (n?=?4); one CC patient developed CD. Of the 21 UC patients, 18 had extensive disease, whereas no consistent phenotype occurred in CD. Literature review revealed 27 comprehensive case reports of patients with diagnoses of both IBD and MC. Thirteen MC patients developed IBD, of which four required colectomy. Fourteen IBD patients later developed MC. There were incomplete clinical data in 115 additional reported patients.

Conclusions: Altogether 173 patients with occurrence of both IBD and MC were found. The most common finding in our patients was onset of CC in a patient with UC. Although these are likely random associations of two different disorders, MC should be considered in the patient with UC or CD if there is onset of chronic watery diarrhoea without endoscopic relapse of IBD.     

Childhood growth and risk of inflammatory bowel disease: a population-based study of 317,030 children

Background: Growth in childhood is associated with later development of autoimmune diseases and cancer, but the impact of growth on risk of inflammatory bowel disease (IBD) remains unknown. We conducted a population-based cohort study to examine whether birth weight, childhood height, or changes in height associated with later risk of IBD.

Methods: Our cohort consisted of 317,030 children from the Copenhagen School Health Records Register (born 1930–1989) with height repeatedly measured from age 7 to 13 and with data on birth weight on a subset. Through linkage to the Danish National Patients Register, cases of IBD were identified. Cox proportional hazard regression was used to examine associations between measures of childhood growth and risk of IBD.

Results: During more than 9 million years of follow-up, 1612 individuals were diagnosed with Crohn’s disease (CD) and 2,640 with ulcerative colitis (UC). Birth weight and childhood heights were not associated with subsequent risk of CD or UC (HRs close to 1.00). Childhood growth from 7 to 10 years (CD: HR, 1.00; 95% CI, 0.85–1.18; UC: HR, 0.92; 95% CI, 0.81–1.05) and 10 to 13 years (CD: HR, 1.02; 95% CI, 0.89–1.17; UC: HR, 0.95; 0.85–1.05) did not associate with risk of IBD either.

Conclusion: In this large population-based cohort study, birth weight and childhood growth did not influence risk of IBD, which contrasts with observations in other chronic diseases. Thereby, the study also suggests that pre-clinical effects of adult IBD are not measurable in childhood and that childhood risk factors for IBD do not influence growth.     

Assessing adherence to objective disease monitoring and outcomes with adalimumab in a real-world IBD cohort

BackgroundData suggests that tight objective monitoring may improve clinical outcomes in IBD.AimTo assess the adherence to serial tight objective monitoring(clinical and biomarkers) and its effect on clinical outcomes.MethodsWe retrospectively reviewed the chart of 428 consecutive IBD patients started on adalimumab between January 1,2015–January 1,2019 [338 Crohn's disease(CD), 90 ulcerative colitis(UC)]. Clinical symptoms(assessed by Harvey-Bradshaw-Index,partial Mayo),C-Reactive Protein(CRP), and fecal calprotectin(FCAL) assessments were captured at treatment initiation and at 3,6,9, and12 months. Dose optimization and drug sustainability curves were plotted by Kaplan-Meier method.ResultsClinical evaluation was available in nearly all patients at 3(CD-UC:95–94%), 6(90–83%), 9(86–85%) and 12(96–89%) months. CRP testing frequency decreased in CD patients over time. Compliance to serial FCAL testing was low. Clinical remission at one-year was higher in patients adherent to early assessment visit at 3 months(p = 0.001 for CD and UC). Adherence to early follow-up resulted in earlier dose optimization in CD and UC patients(pLogrank=0.026 for UC & p = 0.09 for CD). Overall drug sustainability did not differ.ConclusionClinical & CRP, but not FCAL, were frequently assessed in patients starting adalimumab. Adherence to early objective combined follow-up visits resulted in earlier dose optimization, improved one-year clinical outcomes but did not change drug sustainability.     

Identifying Patient Priorities for Preconception and Pregnancy Counseling in IBD

Background

Inflammatory bowel disease (IBD) commonly affects women of reproductive age. Many patients lacking knowledge about IBD and reproduction make uninformed decisions, such as voluntary childlessness and medication cessation. Education should be individualized to the patient’s knowledge base and include topics of most importance to the patient. Our study aimed to describe the priority rankings of topics selected by patients seeking preconception and pregnancy counseling.

Methods

As part of an ongoing prospective study, patients with IBD were asked to rank, in order of importance, nine a priori preconception, pregnancy, and postpartum topics they would like addressed by our specialized care team, which includes an IBD physician and a high-risk obstetrician. χ² and Fisher’s exact tests were used to assess associations between clinical and demographic characteristics and priority rankings, and a p value cutoff for significance was set as .05.

Results

One hundred and fifty-eight women with IBD (mean (IQR) age; 32 (28–37) years) were seen in consultation, and 116 (70 (60%) CD, 43 (37%) UC, and 3 (3%) IBD-U) completed intake forms were analyzed. There were 78 (68%) women seen in the preconception stage, median age 31 (IQR 28–34), and 38 women (32%) were pregnant, median age 32 (IQR 28–33). Safety of IBD medications during pregnancy was most commonly ranked as top priority (40%) for all patients regardless of pregnancy status, followed by control of IBD disease activity and impact on pregnancy (31%), impact of IBD and surgery on fertility (19%), pregnancy outcomes for the baby (18%), mode of delivery (6%), inheritance of IBD (4%), breastfeeding (2%), nutritional health (2%), and vaccines and newborn care (1%). The impact of IBD and surgery on fertility was ranked as the number one priority more often in the preconception group (p value?<?0.01) and mode of delivery in the pregnancy group (p value 0.04). Conclusion: Safety of IBD medications remains a priority topic for patients seeking preconception and pregnancy counseling.

     

Prevalence and risk factors for venous thromboembolic complications in the Swiss Inflammatory Bowel Disease Cohort

Objective: Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), is associated with the occurrence of venous thromboembolism (VTE) such as deep vein thrombosis (DVT) and pulmonary embolism (PE). We aimed to assess the prevalence and associated risk factors for VTE in a large national cohort of IBD patients.

Material and methods: Data from patients of the Swiss IBD Cohort Study (SIBDCS) enrolled between 2006 and 2013 were analyzed.

Results: A total of 2284 IBD patients were analyzed of which 1324 suffered from CD and 960 from UC. VTE prevalence was 3.9% (90/2284) overall and 3.4% (45/1324) in CD patients (whereof 2.4% suffered from DVT and 1.5% from PE) and 4.7% (45/960) in UC patients (whereof 3.2% suffered from DVT and 2.4% from PE). Median disease duration in CD patients with VTE was 12 years [IQR 8–23] compared to eight years [3–16] in CD patients without VTE (p?=?0.001). Disease duration in UC patients with VTE was seven years [4–18] compared to six years [2–13] in UC patients without VTE (p?=?0.051). Age at CD diagnosis ≥40 years (OR 1.851, p?=?0.073) and disease duration >10 years (OR 1.771, p?=?0.088) showed a trend to be associated with VTE. In UC patients, IBD-related surgery (OR 3.396, p?=?0.004) and pancolitis (OR 1.927, p?=?0.050) were significantly associated with VTE.

Conclusions: VTE are prevalent in CD and UC patients. Pancolitis and UC-related surgery are significantly associated with VTE in UC patients.     

Anemia at the time of diagnosis of inflammatory bowel disease: Prevalence and associated factors in adolescent and adult patients

BackgroundThe prevalence, characteristic and determinants of anemia, at the time of inflammatory bowel disease (IBD) diagnosis have yet to be fully elucidated.MethodsRetrospective cross-sectional study. Analytical data and disease characteristics obtained upon diagnosis of 1278 IBD patients [Crohn’s disease/ulcerative colitis (CD/UC): 718/560] were collected.ResultsAnemia was present in 41.2% of patients at diagnosis (47% and 33.8% of CD and UC patients, respectively; p < 0.001), being severe in 5.5%. Iron deficiency anemia represented 69.6% of cases, with no differences between CD and UC. Female sex was the strongest risk factor for anemia in both CD and UC (OR 7.11; 95%CI 4.18–12.10 and 6.55; 95%CI 3.39–12.63, respectively), followed by elevated (≥2 mg/dL) C-reactive protein (OR 4.08; 95%CI 2.39–6.97 and 4.58; 95%CI 2.26–9.27, respectively). Current smoking was a risk factor for anemia in CD (OR 2.23; 95%CI 1.24–4.02), but a protective one in UC (OR 0.36; 95%CI 0.14–0.92). A penetrating CD behavior increased the risk of anemia (OR 3.34; 95%CI 1.36–8.21); in UC, anemia increased with disease extension (E2 + E3) (OR 1.80; 95%CI 1.13–2.86).ConclusionsFemale sex and disease activity are major determinants of anemia at IBD diagnosis. Anemia is associated with disease behavior in CD and with disease extension in UC.     

Diagnostic yield of upper endoscopy in paediatric patients with Crohn's disease and ulcerative colitis. Subanalysis of the HUPIR registry

Background, aimsAccording to Porto Criteria upper gastrointestinal (UGI) endoscopy is recommended in patients with suspected inflammatory bowel disease (IBD). Nevertheless, previous studies revealed frequent involvement of UGI tract even in patients with ulcerative colitis (UC). The aim of the present study was to determine the diagnostic role of esophagogastroduodenoscopy (EGD) and assess the prevalence and different aspects of UGI involvement in children registered in the Hungarian Pediatric IBD Registry (HUPIR) from 1st of January 2007 to 31th of December 2009.MethodsTwenty seven institutes provided prospective follow-up data about newly diagnosed IBD patients to HUPIR. The registry was based on detailed questionnaire (76 parameters) involving anamnestic data, laboratory findings, activity indexes, diagnostic procedures, endoscopic examinations (EGD and ileocolonoscopy), and histological data. Localization and phenotype of disease were based on the Montreal classification criteria.ResultsDuring the 3-year period 420 children were diagnosed with IBD, 265 (63%) of them had Crohn's disease (CD), 130 (31%) UC, and 25 (6%) IBD-unclassified (IBD-U). The mean age at diagnosis was 13.2 years (range: 1.2–18 years). EGD was performed in 237 patients (56%), in most cases in patients suffering from CD. Macroscopic lesions on EGD were noted in 64% of patients with CD and 40% of children with UC. Characteristic lesions for CD (ulcer, erosion, aphthous lesion, and granuloma) were noted in 31% of CD patients, however, EGD helped to establish the final diagnosis in 9% of CD patients (diagnostic yield, 9%).ConclusionsThere was a high frequency of UGI involvement in children with CD and UC. One third of CD patients showed significant lesions at upper endoscopy and one patient out of ten had real diagnostic help from EGD.     

Long-term evolution of direct healthcare costs for inflammatory bowel diseases: a population-based study (2006–2015)

Introduction: We explored the long-term evolution of direct healthcare costs for inflammatory bowel diseases (IBD) using a population-level database in a country with an escalating burden of IBD.

Methods: We searched the database of the Korean National Health Insurance Claims, which covers more than 97% of the South Korean population. An IBD diagnosis was defined as the combination of a billing code for Crohn’s disease (CD: K50.xx) or ulcerative colitis (UC: K51.xx) and at least one claim for IBD-specific drugs. Between 2006 and 2015, a total of 59,447 patients (CD: 17,677; UC: 41,770) were included.

Results: The total and mean cost per capita increased significantly over time. In the last year of the study (2015), the cost for anti-tumor necrosis factor (TNF) therapy accounted for 68.8% (CD) and 48.8% (UC) of the total cost. Age at diagnosis (<20 years vs. ≥30 years) and anti-TNF use were independent predictors of increased total IBD cost. Anti-TNF therapy was the strongest predictor of high-cost outliers (designated as the top 20 percentile of the total costs) for IBD (OR: 160.4; 95% CI: 89.0–289.2). The mean cost among patients with newly diagnosed CD increased significantly over the 8-year follow-up period (p?=?.03), while costs associated with UC remained stable. Only medication costs increased significantly during the follow-up period for CD.

Conclusions: Over the past 10 years, the increased usage of anti-TNF agents has been the key driver of IBD-related healthcare costs. Long-term cost-cutting strategies for patients with CD are warranted.     

IBD care in Europe: A comparative audit of the inpatient management of Crohn's disease and ulcerative colitis using the national UK IBD audit tool

Background and aimsThe National UK IBD audit tool is an electronic database created to improve the quality and safety of care for IBD patients by auditing individual patient care, service resources and organisation against national standards. We used the National UK IBD audit tool to compare the organisation and process of IBD care between services in Oxford (UK) and Milan (Italy), as a pilot study to evaluate its application outside national boundaries.MethodsClinical and demographic data of patients with CD and UC, consecutively admitted during a 2 month period, were collected and compared between the centres, to each other and to the UK IBD standards obtained by previous audit analyses performed in Oxford in 2006.Results20 and 26 patients with UC were admitted in Oxford and Milan, as well as 21 and 20 patients with CD, respectively. Most admissions in Milan were planned admissions for moderately active treatment-refractory disease. No patient died. Oxford had a higher surgery rate. Endoscopy for UC consisted mainly of colonoscopy in Milan (92%) and flexible sigmoidoscopy in Oxford (64%). In CD, Oxford data revealed a higher use of immununomodulators and CT scan, compared with higher use of bowel ultrasound in Milan. CRP was the preferred biomarker of disease activity. The following areas did not reach the standards set for the 2006 UK IBD Audit: the lack in Milan of IBD specialist nurses and few dietitian visits, as well as little attention to heparin prophylaxis and abdominal radiography in UC. Both sites paid little attention to stool cultures and revealed a high rate of active smokers in CD and little attention to bone protection in steroids users. Since the 2006 audit in Oxford, improvements include IBD specialist nurse visits, dietitian visits, number of active smokers, stool samples, prophylactic heparin, bone protection and nutritional assessment.ConclusionsConsistent procedural differences between Oxford and Milan identified by audits of both UC and CD could be resolved by organisational change, with an improvement in the service. The UK IBD audit tool is an easy instrument to assess the processes and outcomes of care delivery in IBD and can be applied also outside UK.     

Disease severity in familial cases of IBD

BackgroundPhenotypic traits of familial IBD relative to sporadic cases are controversial, probably related to limited statistical power of published evidence.AimTo know if there are phenotype differences between familial and sporadic IBD, evaluating the prospective Spanish registry (ENEIDA) with 11,983 cases.Methods5783 patients (48.3%) had ulcerative colitis (UC) and 6200 (51.7%) Crohn's disease (CD). Cases with one or more 1st, 2nd or 3rd degree relatives affected by UC/CD were defined as familial case.ResultsIn UC and CD, familial cases compared with sporadic cases had an earlier disease onset (UC: 33 years [IQR 25–44] vs 37 years [IQR 27–49]; p < 0.0001); (CD: 27 years [IQR 21–35] vs 29 years [IQR 22–40]; p < 0.0001), higher prevalence of extraintestinal immune-related manifestations (EIMs) (UC: 17.2% vs 14%; p = 0.04); (CD: 30.1% vs 23.6%; p < 0.0001). Familial CD had higher percentage of ileocolic location (42.7% vs 51.8%; p = 0.0001), penetrating behavior (21% vs 17.6%; p = 0.01) and perianal disease (32% vs 27.1%; p = 0.003). Differences are not influenced by degree of consanguinity.ConclusionWhen a sufficiently powered cohort is evaluated, familial aggregation in IBD is associated to an earlier disease onset, more EIMs and more severe phenotype in CD. This feature should be taken into account at establishing predictors of disease course.     

Treatment patterns for biologics in ulcerative colitis and Crohn’s disease: a Danish Nationwide Register Study from 2003 to 2015

Abstract

Background: The choice of treatment for Crohn’s disease (CD) and ulcerative colitis (UC) depends among other factors, disease severity. Patients with moderate-to-severe disease should be prescribed biologic response modifiers (biologics), according to guidelines. This study aims to explore the treatment patterns of patients diagnosed with CD and UC between 2003 and 2015 that were treated with biologics in Denmark between the years 2003 and 2016.

Methods: This national register study included patients diagnosed between 2003 and 2015, identified in the Danish National Patient Registry. Biologic therapies available during the study period were infliximab, adalimumab, vedolizumab and golimumab. The share of patients initiating and receiving biologic treatment in each year was estimated. Additionally, the time from IBD diagnosis to first biologic treatment and time between treatments was calculated.

Results: Among 10,302?CD patients and 22,144 UC patients, 28.5% of CD patients and 11.3% of UC patients received treatment with biologics during the study period, with an increasing trend in the number of patients initiating treatment with biologics each year. About 46% of CD patients and 45% of UC patients received their first biologic treatment within the first year after IBD diagnosis. About 57–68% of CD and UC patients received treatment with their second line biologic within 2 months of the last treatment of their first line.

Conclusions: The number of patients initiating biologic treatments after diagnosis increased throughout the study period. Most patients diagnosed with CD and UC are receiving biologic treatments relatively soon after their diagnosis.     

Change of diagnosis during the first five years after onset of inflammatory bowel disease: Results of a prospective follow-up study (the IBSEN Study)

Objective. An exact diagnosis of inflammatory bowel disease (IBD) and further subclassification may be difficult even after clinical, radiological and histological examinations. A correct subclassification is important for the success of both medical and surgical therapeutic strategies, but there is a dearth of information available on the frequency of changes in diagnosis in population-based studies. The objective of this work was prospectively to re-evaluate the diagnosis in an unselected cohort of IBD patients during the first five years after the initial diagnosis. Material and methods. Patients classified as IBD or possible IBD in the period 1990–94 (the IBSEN cohort) had their diagnosis re-evaluated after 1 and 5 years. Initially, the patients were classified as ulcerative colitis (UC), Crohn's disease (CD), indeterminate colitis (IC) or possible IBD. At the 5-year visit, patients were classified as UC, CD or non-IBD. Results. A total of 843 patients (518 UC, 221 CD, 40 IC and 64 possible IBD) were identified. Clinical information was available for 94% of the patients who survived after 5 years. A change in diagnosis was found in 9% of the patients initially classified as UC or CD. A change to non-IBD was more frequent than a change between UC and CD. A large proportion of patients initially classified as IC or possible IBD were diagnosed as non-IBD after 5 years (22.5% versus 50%). When IBD was confirmed in these groups, UC was more frequent than CD. Two changes in diagnosis during follow-up were observed in 2.8% of the patients; this was more frequent in patients initially classified as IC or possible IBD. Conclusions. There are obvious diagnostic problems in a minority of patients with IBD; a systematic follow-up is therefore important in these patients.     

Mortality and causes of death in patients with inflammatory bowel disease: A nationwide register study in Finland

Background and aimIncreased mortality has been reported in Crohn's disease (CD) but mostly not in ulcerative colitis (UC). We evaluated the overall and cause-specific mortality in a nationwide cohort of patients with inflammatory bowel disease (IBD) in Finland.MethodsA total of 21,964 patients with IBD (16,649 with UC and 5315 with CD) from the Special Reimbursement register were diagnosed 1987–1993 and 2000–2007 and followed up to the end of 2010 by collating these figures with the national computerized Cause-of-Death Register of Statistics Finland. In each cause-of-death category, the number of deaths reported was compared to that expected in general population, and expressed as a standardized mortality ratio (SMR).ResultsOverall mortality was increased among patients with CD (SMR 1.33, 95% confidence interval 1.21–1.46) and UC (1.10, 1.05–1.15). SMR was significantly increased for gastrointestinal causes in CD (6.53, 4.91–8.52) and UC (2.81, 2.32–3.34). Patients with UC were found also to have increased SMR from pulmonary (1.24, 1.02–1.46) and cardiovascular disease (1.14, 1.06–1.22) and cancers of the colon (1.90, 1.38–2.55), rectum (1.79, 1.14–2.69) and biliary tract (5.65, 3.54–8.54), whereas SMR from alcohol-related deaths was decreased (0.54, 0.39–0.71). Patients with CD had a significantly increased SMR for pulmonary diseases (2.01, 1.39–2.80), infections (4.27, 2.13–7.63) and cancers of the biliary tract (4.51, 1.23–11.5) and lymphoid and hematopoietic tissue (2.95, 1.85–4.45).ConclusionsIn this Finnish nationwide study increased overall mortality in both CD and UC was observed. The excess mortality of 14 % in IBD is mainly due to deaths related to inflammation in the gut.