Inflammatory bowel diseases (IBD), including ulcerative colitis (UC) and Crohn’s disease (CD), are chronic conditions affecting around 500,000 people in the UK and carries rising prevalence and substantial economic burden. Despite expanding therapeutic choice, contemporary UK cost analyses are scarce. A flexible cost of illness model was developed to estimate the excess costs associated with CDUC in the UK at a population level, including direct NHS costs and societal costs. The model estimates how the direct healthcare and indirect societal costs of IBD change over time, helping to analyse and manage key cost drivers. This supports planning and policy decisions by outlining how interventions and external influences affect long-term spending patterns. The study used public data, published research, and the 2023 IBD UK survey to create a cost model covering prevalence, diagnosis, management, complications, and mortality of CD and UC. Clinical management inputs included resource use associated with the ideal pathways in line with IBD Standards. This model estimated and compared healthcare use and complications in people with CD and UC to the general population over 15 years, including costs from flare-ups, remission, and societal impacts. The estimated total annual direct healthcare cost based on an optimal patient journey for CD and UC is £3 billion. Ongoing management makes up around 93
Objective Risankizumab is an interleukin-23 p19 subunit inhibitor which received approval for Crohn's disease (CD) by UK licensing authorities in May 2023. Our aim was to evaluate the real-world outcomes of risankizumab in the UK. Design We conducted a retrospective, multicentre, cohort study of patients with CD treated with risankizumab across 25 health boards in the UK between 1 January 2021 and 1 November 2024. Our primary outcome was treatment persistence at 6 months. Our secondary endpoints were steroid-free clinical remission (Harvey-Bradshaw index <5), C-reactive protein (CRP) remission (CRP <= 5 mg) and faecal calprotectin (FCAL) remission (FCAL <250 mu g/g). Results We included 763 patients with a median follow-up time of 27 weeks (IQR 18-41 weeks) with a total of 432 and 110 patients having 6-month and 12-month data available. The median number of advanced therapy exposures was 3 (2-4), with 92% (704/763) having failed anti-tumour necrosis factor therapy and 72% (548/763) having failed ustekinumab. Treatment persistence at 6 and 12 months was 95.4% and 89.2%, respectively. Unadjusted persistence rates for ustekinumab-naive versus ustekinumab-exposed patients were 92.7% vs 95.3% and 89.0% vs 74.2% at 6 and 12 months, respectively (p=0.62). Rates of clinical, CRP and FCAL remission were 52% (123/236), 53% (169/319) and 44% (69/156) at 6 months. Rates of clinical remission for ustekinumab naive versus exposed were 57% (29/51) vs 51% (94/185) (p=0.54) 6 months. Adverse events occurred in 17% (n=127) of the cohort, of which 12% (n=92) were serious. Conclusion Risankizumab was effective in a large, real-world, medically refractory CD cohort with excellent persistence and good clinical and biochemical remission rates.
Abstract Inflammatory bowel diseases (IBD), principally Crohn’s disease (CD) and ulcerative colitis (UC), are common chronic disorders involving inflammation and often progressive tissue damage. Genome-wide association studies have mapped many risk signals, but the causal variants, effector genes and relevant cellular contexts remain difficult to resolve, limiting mechanistic interpretation and therapeutic translation. Here we performed a multi-ancestry GWAS meta-analysis of 125,992 individuals with IBD and more than 1.2 million controls, identifying 619 independent association signals (374 novel) at 420 IBD regions that account for 77–80% of SNP-based heritability. Fine-mapping resolved 81 high-confidence variants, 41 not previously reported. Although most signals were shared between CD and UC, 39% showed IBD subtype specificity, with UC signals showing stronger enrichment in functional annotations from intestinal epithelial, secretory and enteroendocrine cells, and CD showing stronger genetic correlations with circulating inflammatory biomarkers, including C-reactive protein and glycoprotein acetylation. Latent causal modelling supported a causal effect of decreased high-density lipoprotein on CD risk. By integrating bulk and single-cell eQTL and pQTL resources using colocalisation and Mendelian randomisation, together with coding-variant evidence from exome sequencing, we prioritised 664 candidate effector genes across 341 signals, including 390 newly implicated IBD genes, revealing new biological mechanisms and candidate therapeutic targets supported by human genetics.
ABSTRACT Background and Aims Primary sclerosing cholangitis (PSC) and inflammatory bowel disease (IBD) represent a unique clinical syndrome affecting up to 80% of PSC patients, characterised by distinct epidemiological patterns, pathophysiological mechanisms and clinical outcomes that differ substantially from either condition occurring independently. This review aims at elucidating the complex clinical landscape of PSC–IBD. Methods A comprehensive literature search was conducted using MEDLINE, EMBASE and Cochrane Library databases until August 2025, focusing on PSC–IBD epidemiology, risk factors, pathophysiology, natural history and clinical management. Evidence synthesis leverages narrative review methodology given the study heterogeneity. Results PSC–IBD demonstrates striking geographic clustering in northern latitudes with annual incidence of 0.87 per 100,000 and prevalence of 13.53 per 100,000 globally. Male predominance characterises the condition (51%–72%), with diagnosis occurring more often between ages 40–59 years. The intestinal involvement usually exhibits extensive colonic involvement with typical rectal sparing (5.6%–66.4%), right‐sided predominance and paradoxically, mild clinical manifestations despite active inflammation found at endoscopy. Pathogenesis involves an intricate interplay between genetic predisposition, gut microbiome dysbiosis, compromised intestinal barrier function and aberrant lymphocyte trafficking through the gut–liver axis. Clinical outcomes are influenced by diagnostic sequence, with IBD diagnosis preceding PSC conferring worse transplant‐free survival (HR 1.34, 95% CI 1.02–1.75). Colectomy timing impacts post‐transplant outcomes, with pre‐transplant colectomy conferring protection against recurrent PSC (HR 0.65, 95% CI 0.42–0.99). Oral vancomycin has shown promising effects on IBD activity in PSC–IBD, with improved clinical remission (adjusted OR 5.24) and endoscopic remission (adjusted OR 2.76) in paediatric cohorts. Patients face significantly elevated malignancy risks, including 3 to 5‐fold increased colorectal cancer incidence (cumulative risk 13% at 30 years) and hepatobiliary malignancies with incidence rates of 7.16, 2.19, and 1.52 per 1000 person‐years for cholangiocarcinoma, hepatocellular carcinoma and gallbladder cancer respectively. Conclusions PSC–IBD represents a distinct clinical entity requiring specialised multidisciplinary management. Current therapeutic options remain limited, with liver transplantation representing the only curative treatment for advanced disease. Understanding the unique epidemiological and pathophysiological features of this condition is essential for optimising patient outcomes and developing targeted therapeutic interventions.
Objectives Obesity is associated with worse treatment outcomes in patients with IBD. We sought to define in an adult and paediatric population of people living with IBD treated with either infliximab or vedolizumab who were recruited to the UK CLARITY IBD to study the: 1. Prevalence of overweight and obesity. 2. Demographic, geographic and disease factors associated with obesity. 3. Influence of obesity on mood, anxiety and IBD related quality of life. 4. Relationship between obesity and geographical determinants of health. Methods Obesity in adults was defined according to the World Health Organization (WHO) body mass index (BMI) definitions, and obesity in children (<19 years) was defined according to the UK-WHO growth charts. Mood and anxiety disorders were assessed using the Patient Health Questionnaire and General Anxiety Disorder Assessment. We extracted deprivation decile from the index of multiple deprivation and geographical determinants of health data from the Access to Healthy Assets and Hazards (AHAH) (Version 4). Results Overall, 31.3% (2147/6864 95% CI 30.2 to 32.4) and 24.6% (1691/6864 95% CI 23.6 to 25.7) patients were overweight and obese, respectively. The highest prevalence of obesity was observed in the East Midlands and the lowest prevalence in London. Multivariable logistic regression analysis demonstrated that obesity was independently associated with female sex, older age, non-Asian ethnicity, no prior IBD surgery and symptoms of active disease. Obesity in adults was associated with depression but not anxiety. Obesity was significantly associated with higher deprivation scores. Discussion Obesity is common in UK patients living with IBD and is independently associated with female sex, older age, non-Asian ethnicity, geographical region, active IBD symptoms, depression, deprivation and poorer air quality.
Background:The ability to predict whether patients with a new diagnosis of Crohn's disease will develop disabling disease is an unmet clinical need. Magnetic resonance enterography is a first-line investigation for Crohn's disease, but its role in prognostication is unknown. Objective(s):To improve prediction of disabling Crohn's disease within 5 years of diagnosis by developing and internally evaluating a multivariable prediction model comprising clinical predictors and adding magnetic resonance enterography scores (Magnetic resonance Enterography Global Score, Simplified Magnetic Resonance Index of Activity and Lémann Index). To estimate the healthcare costs incurred within 5 years of Crohn's disease diagnosis and to explore factors driving costs. Design:A multicentre diagnostic inception cohort. Setting:Nine National Health Service hospitals. Participants:Aged ≥ 16 years with newly diagnosed Crohn's disease. Main outcome measures:Comparative predictive ability of prognostic models, including magnetic resonance enterography scores (Magnetic resonance Enterography Global Score, Simplified Magnetic Resonance Index of Activity and Lémann Index) versus a model based on clinical predictors alone for the development of modified Beaugerie disabling Crohn's disease within 5 years of diagnosis. Statistical analysis:We censored development of modified Beaugerie disabling disease ≤ 90 days from diagnosis, and utilised time-to-event models using Royston-Parmar flexible parametric models. Risk group definitions were prespecified; for risk group definition 1, the high-risk patients were the top 40% with the greatest predicted risk, and the high-risk patients had an absolute risk ≥ 10% for risk group definition 2. The absolute risk cut-off was calculated by sorting patients by predicted risk and using the risk of the eighth (10% of 81) patient who developed modified Beaugerie disabling disease. Results:We studied 194 patients, median age 29, interquartile range 22-44 years. Within 5 years from diagnosis, 42% (81/194) developed modified Beaugerie disabling disease. There was a univariable association between initial need for steroid therapy and developing modified Beaugerie disabling disease [hazard ratio 2.11 (95% confidence interval 1.36 to 3.26)]. Using risk group definition 1, the baseline clinical model had 49% (95% confidence interval 39 to 60) sensitivity and 66% (95% confidence interval 57 to 74) specificity for predicting the development of modified Beaugerie disabling disease. There was no difference in sensitivity and specificity between models incorporating Magnetic resonance Enterography Global Score, Simplified Magnetic Resonance Index of Activity and Lémann Index compared to the baseline clinical model. Using risk group definition 2, the model, including magnetic resonance enterography predictors, had 86% (95% confidence interval 77 to 92) sensitivity and 35% (95% confidence interval 27 to 45) specificity for predicting the development of modified Beaugerie disabling disease. There was no difference in sensitivity between the clinical model and models incorporating Magnetic resonance Enterography Global Score, Simplified Magnetic Resonance Index of Activity and Lémann Index, but specificity was significantly lower for models incorporating Magnetic resonance Enterography Global Score [29% (95% confidence interval 22 to 38)] and Lémann Index [29% (95% confidence interval 22 to 38)]. The mean total 5-year per-patient cost of health care was £24,267 (standard deviation £33,108). Mean 5-year costs were £29,763 (standard deviation £38,278) compared to £20,327 (standard deviation £28,368) for those with and without disabling disease, respectively. The largest contributor to costs was biologic use. Age under 40 years, presence of perianal disease and presence of severe endoscopic disease were associated with higher costs. Limitations:Liège and Montreal criteria for disabling disease could not be studied due to an insufficient event rate. Conclusions:Addition of magnetic resonance enterography scores to a multivariable model comprising existing clinical predictors did not improve prediction of modified Beaugerie disabling disease. Healthcare costs were increased in those aged under 40 years and patients with perianal and severe endoscopic disease. Future work:Testing the predictive ability of magnetic resonance enterography against alternative definitions for disabling Crohn's disease. Trial registration:This trial is registered as ISRCTN76899103. Funding:This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 15/59/17) and is published in full in Health Technology Assessment; Vol. 30, No. 18. See the NIHR Funding and Awards website for further award information.
Inflammatory bowel disease (IBD) is a chronic immune-mediated disorder of the gastrointestinal tract whose genetic basis is only partly resolved because most risk variants identified by genome-wide association studies (GWAS) lie in non-coding regions, limiting direct gene assignment and biological interpretation1,2. Here we analysed whole-exome and whole-genome sequencing data from 86,213 IBD cases and 478,363 controls of European ancestry. We identified 68 IBD genes directly implicated by conditionally independent protein-coding associations across the allele frequency spectrum. Many newly implicated IBD genes are supported by orthogonal genomic or pleiotropic evidence, pointing to disease-related pathways and nominating targets with therapeutic relevance. We further identified allelic series and non-additive effects at key loci such as NOD2 and TYK2. These results show that large-scale sequencing can resolve disease genes and pathways that remain ambiguous from non-coding association alone, providing a more direct route from human genetics to biological insight and therapeutic hypotheses.
Mirikizumab is a monoclonal antibody directed against the p19 subunit of interleukin (IL)-23 to inhibit its interaction with the IL-23 receptor. IL-23 is a key cytokine involved in initiating and perpetuating the inflammatory cascade in inflammatory bowel disease (IBD). Mirikizumab is the first agent from the novel anti-IL-23p19 drug class to be licensed for ulcerative colitis and the first to present long-term endoscopic, histologic, symptomatic, and quality-of-life outcomes. More recently, the VIVID trial programme has led to the approval of mirikizumab in moderate to severe Crohn’s disease. This review explores the history of its development, discusses key immunopharmacological properties unique to the drug, and details the available clinical trials and real-world evidence supporting its use in IBD.
BACKGROUND:Small bowel Crohn's disease (SBCD) is increasingly treated with biological therapies. Predicting response or remission (RoR) for individual patients is difficult and complicates treatment strategy. We aimed to determine if motility magnetic resonance imaging (mMRI) is superior to CRP and fecal calprotectin (FC) for the prediction of RoR at 1 year in patients commencing biologics for SBCD. METHODS:Prospective, multicenter (n = 13) cohort study of patients with active non-stricturing SBCD requiring anti-TNFα or anti-IL-12/23 treatment. We measured mMRI and CRP at baseline and post-induction (visit 2: 12-30 weeks), and FC in a subset. RoR was assessed at 1 year using clinical and structural magnetic resonance enterography parameters. We compared sensitivity, specificity, and area under the receiver operating characteristic curve (ROC-AUC) of changes in mMRI and CRP to predict RoR at 1 year. Secondary outcomes compared mMRI with FC, and prediction of improved quality of life (QoL). RESULTS:Eighty-six participants completed all assessments. Stable or improved mMRI at visit 2 was more sensitive than normalization of CRP for RoR (mMRI:71.0%, 95%CI 52.0-85.8; CRP:45.2%, 95%CI 27.3-64.0%, P = .008) but less specific (mMRI:30.9%, 95%CI 19.1-44.8; CRP:67.3%, 95%CI 53.3-79.3%, P < .001). There was no significant difference in ROC-AUC (mMRI:0.48; CRP:0.53, P = .65). Similar results were obtained for FC. None of mMRI, CRP, or FC predicted patient QoL at 1 year. CONCLUSIONS:Although improved mMRI is more sensitive than CRP and FC to predict RoR at 1 year, it is less specific. No factor predicted patient QoL. Motility MRI remains a marker of disease activity at given timepoints.
Advanced therapies (AT), encompassing biologics and small molecules, are a common and important treatment for inflammatory bowel disease (IBD). However, these treatments pose a risk of reactivating latent infections and therefore require pre-treatment infection screening, but compliance with this screening has previously been reported to be poor. Clinical nurse specialists (CNS) and pharmacists play a key role in facilitating this screening and safely initiating AT, but are understaffed compared to national standards. Through retrospective review of electronic patient records at St George's University Hospital, a tertiary IBD centre in London, UK, we evaluated the impact of staffing on rates of compliance with screening and time from prescription to administration of AT (TAT). 1,035 patients with IBD treated with an AT were identified, and we found a significant correlation between increased CNS staffing and improved screening compliance, as well as a numerical reduction in the TAT. Incidental findings were relatively low, with 8% of patients presenting positive results, all of whom had clinical risk factors. The study advocates for increased staffing and resources in IBD services to enhance patient safety and treatment efficacy.
Abstract Background Individuals with inflammatory bowel disease (IBD) frequently experience pain, poor sleep and anxiety even when disease activity is well controlled. A nationwide UK study showed that 42% individuals with IBD want help with pain and 56% want help with fatigue.(1) Unfortunately, pharmacological management of these symptoms is often inadequate and frequently associated with significant side effects, particularly when pain medications and sedatives are prescribed chronically or concurrently. Despite the risks, there is a lack of evidence regarding the trend in use of these medications in European IBD populations. Methods An extract of over 80,000 individuals with IBD was obtained from the general practice database "Clinical Practice Research Datalink" (CPRD) including details of prescriptions, diagnoses and demographics. Data from 1st January 2010 to 31st December 2019 was analysed to assess prescribing trends for opioids, gabapentinoids, benzodiazepines, and Z-drugs. We examined overall, chronic, and concurrent prescribing patterns. Chronic prescribing was defined as continuous use of opioids for more than 3 months, or Z-drugs and benzodiazepines for more than 4 weeks, in accordance with national guidelines.(2–4) Concurrent prescribing, assessed in 2-year intervals, was defined as overlapping prescriptions of opioids, gabapentinoids, Z-drugs, or benzodiazepines. Data were analysed using Stata 18 and R. Results Over the study period, the annual prevalence of gabapentinoids, and Z-drug use increased (2.5% to 5.5% and 3.3% to 3.4% respectively) while strong opioid (9.2%-8.5%), weak opioid (12.1%-9.9%) and benzodiazepine use (6.1%-5.6%) decreased (see Figure 1). The annual prevalence of chronically prescribed medications in 2019 were 2.5% strong opioids, 3.4% weak opioids, 2.4% benzodiazepines and 1.8% Z-drugs. Over 1 in 5 gabapentinoid prescriptions were concurrent with another pain or sedative medication; 17% with strong opioids, 6% benzodiazepines and 4% Z-drugs, while 18% of strong opioids, 18% Z-drugs and 18% benzodiazepines were concurrently prescribed with another pain medication or sedative (see Table 1). Conclusion Overall, prescribing rates of pain medications and sedatives in individuals with IBD remain concerning. While opioid use has dropped and sedative use is stable, gabapentinoid use has increased, and all are often co-prescribed. Chronic prescribing of these medications provides no clear benefit and poses significant risks. Future efforts should prioritise reducing chronic and concurrent prescribing of pain and sedative medications References 1.J Crohns Colitis. 2023;17(Supplement_1):i130-i132. doi:10.1093/ecco-jcc/jjac190.0099 2.Sir Liam Donaldson. Chief Medical Officer’s Update. Department of Health; 2004:4. Accessed August 21, 2024. https://webarchive.nationalarchives.gov.uk/ukgwa/20120503095605/http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/CMOupdate/DH_4070172 3.Chronic Pain (Primary and Secondary) in over Sixteens: Assessment of All Chronic Pain and Management of Chronic Primary Pain. National Institute for Health and Care Excellence; 2021. https://www.nice.org.uk/guidance/ng193 4.Faculty of Pain Medicine. Surgery and Opioids: Best Practice Guidelines 2021. Published online March 2021.
BACKGROUND:Individuals with inflammatory bowel disease (IBD) often experience pain, mood disturbances, and sleep disruption, which may lead to greater use of pain-relieving and sedative medications compared with the general population. These are associated with increased mortality, paradoxical worsening of pain, and inappropriate IBD treatment discontinuation. Chronic prescribing and co-prescribing increase the risk of respiratory depression, dependence, and overdose. METHODS:Using Clinical Practice Research Datalink, a large nationally representative dataset, we examined the annual prevalence of total, chronic (> 90 days opioids; > 28 days sedatives), and co-prescribed opioids, gabapentinoids and sedatives in adults with incident IBD from January 2010 to December 2019. Multivariable regression identified predictors of chronic or co-prescribing. RESULTS:Among 17,388 individuals, over 20% were prescribed a pain or sedative medication each year. Annual prevalence for opioids and gabapentinoids increased (13.6%-14% and 2.5%-5.6%, respectively) while sedative prevalence remained stable (8.4%). Chronic prescribing increased for strong opioids (3.6%-4.6%), weak opioids (3.6%-3.7%) and sedatives (4.2%-4.4%). Between 4.2% and 6.9% of individuals per year were co-prescribed opioids, gabapentinoids, and/or sedatives. Female sex, smoking, older age at diagnosis, Crohn's disease, and a diagnosis of inflammatory arthropathy, irritable bowel syndrome, fibromyalgia, or anxiety/depression were significantly associated with chronic and/or co-prescriptions of opioids or sedatives. CONCLUSION:A substantial proportion of individuals with IBD are prescribed pain and sedative medications, including long-term and co-prescriptions. Identifying high-risk patients is essential to ensure they are prioritised for limited resources, such as psychological therapies, as alternatives to harmful prescriptions.
Abstract Background Ustekinumab is a mainstay of treatment for Crohn’s disease (CD) and has been shown to be effective and safe. The SEQUENCE(1) trial found risankizumab is superior to ustekinumab at inducing endoscopic remission and non-inferior with respect to clinical remission. However, there is a lack of real-world data investigating the effectiveness of risankizumab in ustekinumab-exposed patients with active CD and we therefore aimed to assess this. Methods A retrospective, observational study was performed at a tertiary inflammatory bowel disease centre. We included all patients diagnosed with CD whose treatment was switched from ustekinumab to risankizumab between December 2023 to November 2024. Electronic patient records were used to collect anonymised data on demographics, disease phenotype and previous advanced therapy. Clinical and biochemical markers of disease activity were assessed at baseline (prior to treatment switch to risankizumab), and at 3 and 6 months after switching. Statistical significance was assessed using a one-sided paired t-test. Results Patient demographics are summarised in table 1. 52 patients were included in the study; mean age 45 years, age range 19-82 years, mean disease duration 12.7 years. 10 patients were switched due to primary loss of response to ustekinumab, 41 due to secondary loss of response and 1 due to side effects. The mean duration of follow-up was 178 days. All patients had clinical (Harvey Bradshaw Index (HBI)), biochemical (faecal calprotectin (FCP) or C-reactive protein (CRP)), radiological or endoscopic evidence (Simple Endoscopic Score for CD (SESCD) of active disease at baseline. The mean HBI at baseline was 3.4 which significantly improved at 3 months to 2.6 (n=40, p=0.02) and 6 months (n=13, p=0.03). The mean FCP at baseline was 530, which significantly decreased at 3 months to 211 (n=26, p=0.04). The mean albumin at baseline was 37.3g/L which significantly increased to 38.3g/L at 3 months (n=44, p=0.01). Changes in CRP, FCP and albumin at 6 months were not statistically significant. SESCD was available for 3 patients at 6 months of which 1 improved, 1 worsened and 1 was unchanged. No new safety signals were identified. Conclusion This real-world study demonstrates that in patients with active CD switching from ustekinumab to risankizumab can, at least in the short term, significantly improve symptoms and biochemical markers of disease activity. Larger studies with longer-term outcomes are needed to understand the impact of switching to anti-IL23p19 therapies in ustekinumab-exposed patients. References 1.Peyrin-Biroulet L, Chapman JC, Colombel JF, Caprioli F, D’Haens G, Ferrante M, et al. Risankizumab versus Ustekinumab for Moderate-to-Severe Crohn’s Disease. N Engl J Med. 2024 Jul 18;391(3):213–23
Abstract Background Risankizumab is an IL-23 inhibitor which received approval for Crohn’s disease (CD) by the NICE committee in May 2023. Our aim was to evaluate the real-world outcomes of risankizumab in the United Kingdom (UK). Methods We conducted a retrospective, multicentre, cohort study across twenty health boards in the UK, of patients with CD treated with risankizumab between the 1st of January, 2021 and the 1st of November 2024. Our primary outcome was treatment persistence at 6 months. Our secondary endpoints were treatment persistence, steroid-free clinical remission (Harvey-Bradshaw index <5), biomarker remission (CRP ≤5 mg/L and FCAL <250 µg/g), at 3, 6 and 12 months, and if effectiveness was different between ustekinumab naive and exposed patients. Patients who discontinued therapy for any reason were considered treatment-failure for all indices after the time point they ceased therapy. We recorded adverse events, including hospitalisation, bowel resection, infection, and death. Results We identified 558 patients who commenced risankizumab, of which 526 patients had 3 month outcome data available with a median follow-up time of 28 weeks (IQR, 19-41 weeks). The median number of advanced therapy exposures were 3 (2-4), with 90% (475/526) having failed anti-TNF therapy, and 73% (382/526) having failed ustekinumab (Table 1). Treatment persistence was 97.5%, 94.8% and 89.5% at 3, 6 and 12 months (Figure 1). Unadjusted persistence rates for ustekinumab naïve vs ustekinumab exposed patients were 93.8% vs 95.3% and 93.8 % vs 89.3% at 6 and 12 months respectively (p=0.7). Rates of clinical remission were 59% (211/358), 50% (77/154), and 44% (14/32) at 3, 6 and 12 months. Rates of clinical remission for ustekinumab naive vs exposed were 67% (70/104) vs 55% (141/253) and 60% (21/35) vs 47% (56/119) at 3 and 6 months respectively. CRP remission rates were 57% (266/465), 52% (108/208), and 53% (28/53) at 3, 6 and 12 months. FCAL remission rates were 58% (140/243), 48% (55/114), and 44% (17/38) at 3, 6 and 12 months. There was a significant reduction in median HBI, CRP and FCAL during follow-up (Figure 1). We observed that 12% (62) of patients were hospitalised due to symptomatic CD (58) or an implicated adverse event (4). We observed that 3% (17/526) underwent CD related resectional surgery. Adverse events occurred in 16% (85/526) of the cohort. Serious adverse events occurred in 5% (28/526), of which 25 were hospitalisations. Conclusion Risankizumab was effective in a large, real-world, medically refractory CD cohort with excellent short-term persistence and good clinical and biochemical remission rates. Persistence rates were similar between ustekinumab naive and exposed patients, however clinical remission rates were higher in the naive group.
Objective Individuals who identify as transgender or gender non-conforming (TGNC) number approximately 262 000 in England and Wales. However, they are under-represented in healthcare research and little is known about their experiences managing a chronic health condition and their unique needs. Inflammatory bowel disease (IBD) is a chronic inflammatory condition of the gastrointestinal tract which can lead to long-term complications such as surgery and colorectal cancer. Ensuring a positive patient experience is crucial to maintaining good adherence with medical therapy and compliance with regular invasive surveillance procedures to reduce the risks of these occurring. However, there is no data on the experiences of people who identify as TGNC and who suffer from IBD (TGNC-IBD) when engaging with IBD healthcare services. Our focus group aimed to provide qualitative data on the experiences of this population. Methods Following established qualitative research processes, and through work with Crohn’s and Colitis UK, we held a focus group with TGNC-IBD to gain, for the first time in the UK, patient-centred insight into their experiences engaging with IBD services and highlight areas that need improving. Results Common themes identified were healthcare professionals making assumptions regarding gender identity, poor mental health support, a lack of research into TGNC-IBD and poor facilities. Conclusion The findings underscore the need for improved training for healthcare providers and modification to IBD services as well as further research to address the unique needs of TGNC-IBD.
Magnetic resonance enterography (MRE) is a first-line investigation to diagnose Crohn’s disease (CD), but its role for prognostication is unknown. Accordingly, we assessed the predictive ability of prognostic models including MRE scores (MRE Global Score (MEGS), simplified MR Index of Activity (sMARIA), and Lémann index (LI)) against models using clinical predictors alone for the development of modified Beaugerie disabling CD (MBDD) within 5 years of diagnosis. This was a multicentre, diagnostic inception cohort of patients with newly diagnosed CD across 9 UK hospitals, followed for 4 years or more. We censored development of MBDD ≤ 90 days from diagnosis, and used time-to-event models using Royston-Parmer flexible parametric models. We included 194 patients, median age 29, IQR 22–44 years, 52