Introduction:Emerging adulthood (ages 18-25) involves significant changes, made more challenging for those with inflammatory bowel disease (IBD), especially when transitioning from pediatric to adult care. Research has focused on transition readiness, with less attention to patient-prioritized outcomes after transfer. Less is also known about those diagnosed during emerging adulthood, who must navigate a new diagnosis and disease management. This study estimated the prevalence of behaviors reflecting health care autonomy among emerging adults with IBD, comparing pediatric- and adult-diagnosed cases. Methods:In this cross-sectional study, emerging adults with IBD in Alberta, Canada completed a questionnaire assessing IBD knowledge, self-management, relationship with their IBD care team, and disease management. Participants were grouped as pediatric-diagnosed (<18 years) or adult-diagnosed (18-25 years). Descriptive and comparative analyses were conducted. Results:Among 178 participants (122 pediatric-diagnosed; 56 adult-diagnosed), pediatric-diagnosed cases were younger on average than adult-diagnosed cases (21.0 vs. 22.2 years), with similar distributions of gender, ethnicity and disease type. IBD knowledge scores, relationship ratings, and medication adherence scores were similar between groups. Pediatric-diagnosed cases were less independent than adult-diagnosed cases in some self-management tasks, including scheduling visits (72.6% vs. 92.9%), contacting their care team (76.0% vs. 94.6%), calling in medication refills (75.5% vs. 90.7%), and preparing questions for providers (63.3% vs. 79.3%). Conclusion:Pediatric-diagnosed cases demonstrated similar IBD knowledge, medication adherence, and satisfaction with their care team, but were less independent in some self-management tasks compared to adult-diagnosed cases. These findings highlight the need for targeted education and support for emerging adults with IBD.
The role of diet in the management of inflammatory bowel disease (IBD) is increasingly recognized with recent guidelines providing specific dietary recommendations. Although mobile health apps targeting diet and lifestyle habits in IBD are emerging, few are designed for self-management or have been formally evaluated for effectiveness. We have co-designed a diet guidance and tracking app (MyIBDDiet) with and for patients with IBD with the aim of improving overall diet profile. We will be conducting a 60-day single-centre pilot randomized trial of 40 IBD patients randomized in 1:1 ratio to MyIBDDiet app or usual care. Participants in the usual care group will crossover to the MyIBDDiet app group after 30 days. Primary outcome is usability assessed using a mixed method quantitative [Theoretical Framework of Acceptability (TFA), mHealth App Usability Questionnaire (MAUQ)], and qualitative approach (semi-structured interviews). Secondary outcomes include clinical efficacy evaluated by change in diet quality [Mini-EAT questionnaire, Automated Self-administered 24-Hour Dietary Assessment Tool (ASA-24), Healthy Eating Index (HEI), Mediterranean Diet Serving Score (MDSS)], changes in biomarkers of processed food intake (spot urine sodium and chloride), changes in IBD disease activity [Patient Reported Outcome (PRO2 and PRO3), C-reactive protein, fecal calprotectin], changes in quality of life [EuroQol-5 Dimension (EQ-5D), Short Inflammatory Bowel Disease Questionnaire (SIBDQ)] and safety. Exploratory outcomes include changes in fecal microbiome and serum and fecal metabolome. Additional quantitative data will be collected from the digital analytics of MyIBDDiet app. The pilot data generated will inform the design of an adequately powered randomized trial and future mobile app development and evaluation by providing a framework for evaluation of clinical effectiveness. Trial registration ClinicalTrials.gov Identifier: NCT06683105 . Registered on 8 November 2024.
Abstract Background Small bowel carcinomas (SBC) are rare, accounting for only 1% to 5% of all gastrointestinal cancers. However, patients with Crohn’s disease face a significantly elevated risk of SBC. This case report outlines a rare case of preoperatively-diagnosed jejunal adenocarcinoma in a patient with long-standing Crohn’s disease with diagnosis and surveillance through double balloon endoscopy (DBE). Aims A 41-year-old female with a 30-year history of small bowel Crohn’s disease presents to the hospital with overt obscure GI bleeding. Throughout the course of her disease, she was thought to be in remission with Pentasa and 6-MP, though she had mild inflammation seen in the jejunal and neoterminal ileum visualized on magnetic resonance enterography (MRE). Subsequent oral DBE showed severe nodularity and friability throughout the jejunum with biopsies showing invasive moderately differentiated adenocarcinoma. Combined oral and rectal DBE was used to facilitate tattoo placement prior to open right hemicolectomy with jejunal resections, which was complicated by intraoperative bleed and anastomotic leak. Unusually, cross-sectional imaging with computer tomography (CT) and positron emission tomography (PET-CT) showed no GI tract enhancement or evidence of metastatic spread. Post-operatively, oral DBE found a saddle shaped deformity in the jejunum which had dysplasia on one biopsy. As a result of her complicated post-operative course, the patient is receiving regular surveillance with oral DBE every six months. Methods Balloon-assisted endoscopy (BAE) has the potential to allow for endoscopic and histopathologic examination of the entire gastrointestinal tract, which makes BAE an ideal modality for both diagnosis and surveillance in Crohn’s disease. In this particular case, DBE was able to detect a subtle jejunal lesion that was not identified on CT enterography or even a PET-CT scan, resulting in earlier detection of a small bowel adenocarcinoma that was curable with surgery. Results Currently, there is a gap in literature surrounding small bowel adenocarcinoma surveillance. This is further complicated by the lack of an established macroscopic appearance of SBC and the unknown prognostic significance of dysplasia on pathology in the context of small bowel inflammation. Further, many centres have limited access to BAE. Conclusions This case shows that it has an important, and underutilized role, in IBD management. It is currently the only methodology for visual assessment and biopsy of lesions in the mid gut. Small bowel endoscopy access should be increased in Canada with a focus on IBD patients. Development of high risk identifiers for possible small bowel carcinoma also need to be developed as part of ongoing guidelines. Funding Agencies None
The expanding portfolio of targeted therapies for ulcerative colitis (UC) suggests that a more precise approach to defining disease activity will aid clinical decision-making. This prospective study used genome-wide microarrays to characterize gene expression in biopsies from the most inflamed colon segments from patients with UC and analyzed associations between molecular changes and short-term outcomes while on standard-of-care treatment. We analyzed 141 biopsies—128 biopsies from 112 UC patients and 13 biopsies from eight inflammatory bowel disease unclassified (IBDU) patients. Endoscopic disease was associated with expression of innate immunity transcripts, e.g. complement factor B (CFB); inflammasome genes (ZBP1 and PIM2); calprotectin (S100A8 and S100A9); and inflammation-, injury-, and innate immunity-associated pathway analysis terms. A cross-validated molecular machine learning classifier trained on the endoscopic Mayo subscore predicted the endoscopic Mayo subscore with area-under-the-curve of 0.85. A molecular calprotectin transcript score showed strong associations with fecal calprotectin and the endoscopic Mayo subscore. Logistic regression models showed that molecular features (e.g. molecular classifier and molecular calprotectin scores) improved the prediction of disease progression over conventional, clinical features alone (e.g. total Mayo score, fecal calprotectin, physician global assessment). The molecular features of UC showed strong correlations with disease activity and permitted development of machine-learning predictive disease classifiers that can be applied to expanded testing in diverse cohorts.
Abstract Background The natural history Crohn’s disease (CD) can be complicated by strictures. Balloon-assisted endoscopy (BAE) has significantly improved the ability to assess and treat small bowel CD, allowing for stricture dilation to improve patient symptoms and potentially delay or avoid surgery. We present a single-centre CD cohort of patients that have undergone BAE for stricture dilation. We assess procedural success, outcomes and safety, evaluate factors associated with a risk of requiring surgical management. Methods All patient who underwent BAE for CD from the period oof April 2012 to January 2024 were assessed and recorded. Within this group, we identified patients who had undergone assessment and/or dilation of structuring CD. Patient demographic and procedural details were extracted. Long-term outcomes, including requirement for repeat dilation and requirement for surgery were recorded from time initial of initial BAE as surrogates for the durability of dilation in these patients. Patients required surgery post initial BAE were compared to the non-surgical group. Results At the University of Alberta Hospital, out of 532 BAE procedures in 231 patients, 157 pt underwent 282 BAE procedures with 629 strictures dilated. In our cohort, 16 strictures were non-traversable and 3 were failed dilations. We had a > 95% successful dilation rate. One perforation occurred requiring emergent surgery (n=1). 65 pts required surgery and 92 pts were managed with dilation. and pharmacotherapy. Overall, 28/65 patients were active smokers (43.08%) in the surgical group vs. 24/92 (26.09%). Biologic use was comparable (76.9% vs 73.9%). The average minimum diameter dilated was lower 15.2 mm (+/- 0.25) vs 16.2 mm(+/- 0.16) in the surgical group. Non-traversable strictures post-dilation was higher in the surgical group (14.72% vs 9.20%). A total 65 patients undersent surgery with an average time of 32.22 months (excluding emergent/urgent surgeries) from index BAE and avg 8.79 months from most recent BAE. There was a total of 3 emergent surgeries (<24 hours from BAE to surgery, including one perforation from intraprocedural complication), 7 urgent surgeries (<30 days from BAE to surgery). Conclusion Based on this cohort, the majority of patients with CD strictures CD can be successfully managed with BAE stricture dilation, and in those requiring surgery the average time from initial BAE to surgery was 32 months. BAE stricture dilation may play an important role in preventing emergent/unplanned surgical interventions and preventing surgeries in select patients. Although this study is currently descriptive, further data analysis of this group is ongoing currently.
Background: Ulcerative colitis (UC) is a chronic, relapsing inflammatory bowel disease that requires regular monitoring. The University of Alberta IBD Unit piloted a proactive outreach protocol for biologic-naïve UC patients, including clinical and biochemical variables, and assessed its impact on UC care. Methods: Biologic-naïve UC patients without follow-up for ≥6 months were recruited by phone and completed Partial Mayo, modified Sutherland Index, and MARS-5 questionnaires, as well as blood work and fecal calprotectin (FCP). Results were sent to each patient’s gastroenterologist, who then completed a survey about intended UC management changes. Results: 81 patients completed the protocol. UC management was changed in 45 (55.6%) cases, with 82.2% of changes being expedited follow-up or management escalation. Six patients had active flares, and 17 with asymptomatic inflammation were identified. 23 patients underwent endoscopy, with 10 (43.4%) showing active disease. Six patients started biologic therapies based on protocol and endoscopic findings. UC management escalations were significantly predicted by FCP and Sutherland Index scores on logistic regression analysis. 86.4% of gastroenterologists rated the protocol helpful. Conclusions: Patient care can be improved by a one-time, proactive outreach program for biologic-naïve UC. Outreach and monitoring in biologic-naïve UC should include assessment of both FCP and clinical markers to improve UC management.
Ustekinumab dose escalation (DE) may be an effective strategy to recapture clinical response in patients with ulcerative colitis (UC). The aim of this study was to assess the real-world long-term effectiveness and safety outcomes following ustekinumab DE in patients with moderate-to-severe UC. This multicenter retrospective cohort study included patients with moderate-to-severe UC who received at least one IV induction ustekinumab dose between January 2016 and November 2021. We compared ustekinumab DE to no DE, examining clinical, biochemical, and endoscopic disease outcomes. The primary endpoint was corticosteroid-free clinical remission (partial Mayo score ≤ 2 without systemic corticosteroids) at the end of follow-up. Cox proportional hazards regression analysis was performed for factors associated with time to DE, and a Kaplan–Meier plot was created for visualizing drug persistence probabilities. We enrolled 121 patients. Eighty-one patients (67
This review article aims to summarize the safety and efficacy of medical therapies in elderly inflammatory bowel disease (IBD) patients contextualizing the therapies within the framework of polypharmacy, comorbidities and frailty. Anti-TNF therapies are the most extensively studied advanced therapy in elderly IBD patients. Based on most published studies, elderly IBD patients on anti-TNF therapy versus no advanced therapy demonstrate decreased treatment persistence that could be attributed to both diminished clinical response and increased adverse events. Caution should be used when considering Janus Kinase inhibitors in the elderly given the risk of infection and the possible increased risk of thrombosis. The majority of literature on the medical management of elderly IBD patients revolves around retrospective and observational studies. Further prospective research is required in the areas of disease pathophysiology, comparative effectiveness of therapies and frailty to better inform clinical practice. Multidisciplinary care models can best position elderly IBD patients to obtain optimal outcomes.
Abstract Background Inflammatory bowel disease (IBD) outreach monitoring has been shown to be cost-effective and reduce healthcare utilization. IBD STRIDE-II guidelines recommend monitoring patient-reported outcomes (PRO’s), biomarkers (e.g., fecal calprotectin (FCP), C-reactive protein (CRP)), and endoscopy to determine if patients achieve defined therapeutic targets. Previous monitoring in the literature has focused on PRO’s alone, which risks undertreating asymptomatic inflammation in spite of elevated flare and colorectal cancer risk. We designed a protocol to closely monitor biomarkers and PRO’s. Aims We aimed to assess STRIDE-II based clinical response and facilitate responsive disease management for new advanced therapy start patients. Methods Patients complete 24 weeks of outreach monitoring. PRO’s are obtained on days 0, 3, and 7, and every 2 weeks thereafter. Serum labs are collected at baseline and weeks 4, 8, 12, 16, and 24. FCP is collected at baseline and weeks 8, 16, and 24. Medication adherence is assessed at baseline and weeks 12 and 24. Endoscopy is booked 6-12 months from the start date. Treating gastroenterologists receive granular clinical reports summarizing results, the date of last IBD review, and last flare. Results 75 protocol patients on the following therapies: ustekinumab (n = 31), risankizumab (n = 17), tofacitinib (n = 14), upadacitinib (n = 10), vedolizumab (n = 2), and infliximab (n = 1) were monitored in our protocol so far. 51 patients (68.0%) had failed 1+ prior advanced therapies and 13 (17.3%) had prior IBD surgery. 7 (9.3%) were switched from their initial agent before 24 weeks due to lack of response. 1 (1.3%) had an adverse drug event. 64 patients (85.3%) complied with all FCP collections and 73 (97.3%) completed 95+% of PRO’s. Per STRIDE-II definitions, 47 patients (62.7%) demonstrated clinical response during the protocol and 25 (33.3%) achieved remission by 24 weeks. 15 (20.0%) received steroid courses, 9 (12.0%) presented to an emergency department, and 5 (6.7%) were hospitalized for IBD during monitoring. Conclusions Our proactive monitoring protocol provided granular real-world clinical response data to treating physicians. Patients were highly compliant with serial PRO, FCP, and serum labs collection. The protocol facilitates responsive disease management and may lead to treatment-specific monitoring recommendations. In future, we will compare protocol patients to standard of care managed patients to learn if the protocol reduces healthcare utilization and improves patient outcomes and quality of life. Funding Agencies None
We detect and interactively visualize occurrence, frequency, sequence, and clustering of extraintestinal manifestations (EIM) and associated immune disorders (AID) in 30,334 inflammatory bowel disease (IBD) patients (Crohn’s disease (CD) n = 15924, ulcerative colitis (UC) n = 11718, IBD unclassified, IBD-U n = 2692, 52% female, median age 40 years (IQR: 25)) with artificial intelligence (AI). 57% (CD > UC 60% vs. 54%, p < 0.00001) had one or more EIM and/or AID. Mental, musculoskeletal and genitourinary disorders were most frequently associated with IBD: 18% (CD vs. UC 19% vs. 16%, p < 0.00001), 17% (CD vs. UC 20% vs. 15%, p < 0.00001) and 11% (CD vs. UC 13% vs. 9%, p < 0.00001), respectively. AI detected 4 vs. 5 vs. 5 distinct EIM/AID communities with 420 vs. 396 vs. 467 nodes and 11,492 vs. 9116 vs. 16,807 edges (links) in CD vs. UC vs. IBD, respectively. Our newly developed interactive free web app shows previously unknown communities, relationships, and temporal patterns—the diseasome and interactome.
Background Evaluating small bowel Crohn’s disease (SBCD) often relies on cross-sectional imaging (eg, computed tomography enterography [CTE]) and small bowel endoscopy (eg, balloon-assisted enteroscopy [BAE]). The accuracy of CTE for evaluating SBCD compared to BAE remains unclear and is assessed in this study. Methods This single-centre retrospective study included patients with SBCD who underwent both CTE and BAE within 6 months. Findings of active inflammation, long-segment disease, skip-segments, and presence of both strictures and high-grade strictures (HGS) were extracted from CTE and BAE reports and analyzed using BAE as the reference standard. Results Sixty-three CTE and BAE pairings were identified. CTE was sensitive for assessing active inflammation (80.0%) and all strictures (92.1%) and specific for long-segment inflammation (95.0%) and HGS (87.2%). Sensitivity was low for HGS (60.9%) and long-segment inflammation (50.0%), with poor specificity for all strictures (68.4%). In surgically naïve bowel, accuracy improved for active inflammation (sensitivity: 83.3%, specificity: 100%) and worsened for HGS (sensitivity: 42.9%, specificity: 84.2%). In postsurgical bowel, CTE sensitivity for HGS improved to 68.8%. Conclusion Computed tomography enterography accurately detected active inflammation and fibrostenotic disease but may not be sufficient to rule out clinically significant findings such as HGS. The accuracy of CTE varied between surgically naïve and postsurgical bowel. CTE remains an important modality for evaluation of SBCD and should be used in combination with BAE when clinical discrepancy arises.
BACKGROUND:Approximately 70% of primary sclerosing cholangitis (PSC) patients have inflammatory bowel disease (IBD). The IBD therapies currently used to treat PSC-IBD patients have side effects and can be costly. Oral vancomycin (OV)-a safe, economical, and convenient therapy-has been reported to be a salvage therapy in refractory PSC-IBD patients. This systematic review aims to summarize the current literature regarding the effectiveness and safety of OV to treat IBD in PSC patients. METHODS:A systematic literature review of Scopus, Embase, Web of Science, MEDLINE, and CINAHL was performed until March 2024. The Murad scale, Newcastle-Ottawa scale, and Cochrane Collaboration Risk of Bias Tool were used to determine the quality of the case reports and case series, cohort studies, and randomized controlled trial (RCT), respectively. The outcomes sought were response or remission across clinical, biochemical, endoscopic, and histological parameters. RESULTS:Of the 1725 published studies, we identified 9 case reports, 7 case series, 3 cohort studies, and 1 RCT. Most studies reported an improvement in clinical IBD symptoms such as diarrhea and hematochezia. Fewer publications provided supporting objective data in the form of fecal calprotectin, endoscopic Mayo scores, and histology. There were no reports of vancomycin-resistant enterococci infections. CONCLUSIONS:Oral vancomycin appears safe and effective to treat IBD in a subset of PSC patients. Future studies would benefit from prospective data collection incorporating standardized symptomatic, endoscopic, and histologic indices. Ultimately, a well-powered RCT is needed to better assess the effectiveness, safety, and durability of OV therapy.
Background:Individuals with inflammatory bowel disease (IBD) require comprehensive care to address the physical and psychosocial burden of their disease. The demand for IBD care often exceeds availability, resulting in delayed access and suboptimal management. As a result, patients with IBD are required to self-manage significant aspects of their disease between appointments with their medical team. Digital self-management tools may help address this gap by empowering patients to be more engaged in managing their disease, potentially improving outcomes and reducing the strain on the health care system. Objective:This study aimed to design, implement, and evaluate a bundled digital health tool, MyIBDToolkit, with the overarching goal of improving the quality of care and self-management for patients with IBD in Alberta, Canada. Methods:A bundled digital health tool, MyIBDToolkit, will be integrated into our provincial electronic health record system to ensure broad accessibility and continuity of care. We will use a type 2 hybrid effectiveness-implementation design to evaluate both the clinical impact and real-world integration of the toolkit. We will assess effectiveness through changes in key outcomes such as health care utilization (eg, emergency visits, hospitalizations), disease burden on patients (eg, quality of life, symptom control), and burden on the health care system. These outcomes will be measured using comprehensive health care administrative data. A dual-comparison approach will be used: a within-subject comparison of health care utilization and disease burden before and after implementation of the MyIBDToolkit, and a between-group comparison of outcomes among toolkit users versus nonusers. To evaluate implementation success, we will examine reach (ie, number of patients and providers using the tool), fidelity to the planned timeline, sustained use over time, and factors influencing adoption and maintenance. Our goal is to reach 10,000 patients across Alberta, Canada, within three years. Results:We received funding for this project in January 2023. In preparation for the pilot launch, we have identified key stakeholders, including patients, health care providers and, administrators, and developed strategies to assess their readiness for MyIBDToolkit. We are also collecting mixed-methods data from patients to explore potential barriers and facilitators to using MyIBDToolkit. The first phase of MyIBDToolkit was launched in October 2024. Conclusions:MyIBDToolkit represents a scalable and patient-centered approach to the self-management of IBD care. By empowering patients to self-manage their disease between health care visits, we aim to reduce the burden of IBD on patients, providers, and the health care system. By evaluating the effectiveness and the implementation of the MyIBDToolkit, we aim to generate actionable and sustainable improvements to IBD care in Alberta.
Background: Despite recent emerging literature involving the utility of endoscopic balloon dilation (EBD) of strictures via balloon-assisted endoscopy (BAE), specifically regarding the management of Crohn’s disease (CD), the optimal clinical approach with balloon systems has been largely neglected in academic literature. Objectives: This study assesses the intra-procedural success and safety of EBD via BAE for small bowel CD strictures while detailing our clinical approach and technique. Secondarily, we compare the single-balloon endoscope (SBE) and double-balloon endoscope (DBE) systems for EBD-related outcomes. Design: Retrospective consecutive patient cohort analysis. Methods: We retrospectively assessed a consecutive small bowel CD patient cohort undergoing BAE at the University of Alberta Hospital endoscopy unit from 2013 to 2020. The primary endpoint discerned the safety and immediate success rate of EBD during endoscopy, and comparisons of the dilation parameters and efficacy of SBE versus DBE were assessed as secondary outcomes. Results: During the study period, 87 patients (44 male) with a mean age of 56 ± 14.7 years underwent 179 endoscopic procedures (92 DBE and 87 SBE). Of 358 strictures encountered, 320 (89.4%) were successfully dilated and traversed. The mean maximum dilation diameter was 15.76 ± 2.10 mm. There were no perforations or major adverse events. Conclusion: EBD via BAE is a safe procedure in small bowel CD with a high intraprocedural success rate. Overall, SBE had a higher success rate in traversing strictures before and after dilation using our technique. This analysis is limited by the retrospective nature of our study and must be balanced against the inherent benefits of the DBE system. Keywords balloon-assisted , Crohn’s disease , endoscopy , small bowel , stricture dilation
This study assesses 2 different disease activity measures, the Modified Truelove Witts Severity Index and the partial Mayo score, in hospitalized patients with acute severe ulcerative colitis (UC) for prediction of postdischarge corticosteroid-free clinical remission and endoscopic improvement to help guide future considerations for disease activity assessment. In this post hoc analysis from the Tofacitinib for Hospitalized Acute Severe Ulcerative Colitis Management (TRIUMPH) trial, these results suggest resolution of the Mayo rectal bleeding subscore may have high prognostic utility and could be considered as a primary end point for hospitalized UC trials. The study underscores the need for further research on patient-reported outcomes and endoscopic indices in larger populations for inpatient UC trials.