Crohn's & Colitis 360Pub Date : 2026-03-11eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag019
Amanda Ricciuto, Hayley E McKay, Jennifer C deBruyn, Eileen Crowley, Peter C Church, Hien Q Huynh, Anthony R Otley, Ayub Shaikh, David R Mack, Nicholas Carman, Wael El-Matary, Rilla Schneider, Eytan Wine, Thomas D Walters, Anne M Griffiths
{"title":"Early proactive therapeutic drug monitoring with ustekinumab therapy in pediatric Crohn's disease: data from the prospective Canadian children IBD network.","authors":"Amanda Ricciuto, Hayley E McKay, Jennifer C deBruyn, Eileen Crowley, Peter C Church, Hien Q Huynh, Anthony R Otley, Ayub Shaikh, David R Mack, Nicholas Carman, Wael El-Matary, Rilla Schneider, Eytan Wine, Thomas D Walters, Anne M Griffiths","doi":"10.1093/crocol/otag019","DOIUrl":"10.1093/crocol/otag019","url":null,"abstract":"<p><strong>Background: </strong>Ustekinumab dosing information for pediatric Crohn's disease (CD) is limited.</p><p><strong>Aims: </strong>To examine ustekinumab pharmacokinetic and effectiveness data in a largely bio-naïve cohort, focusing on early (week 8) levels.</p><p><strong>Methods: </strong>Children in the prospective Canadian Children IBD Network initiating intravenous (IV) ustekinumab for CD with a week 8 level were evaluated. Disease activity was assessed by corticosteroid-free clinical remission (CSFR), biochemical CSFR, and mucosal healing (MH) by colonoscopy or fecal calprotectin <150 µg/g beyond 16 weeks. We compared drug levels by weight group (</≥40kg) and outcome, using receiver-operating characteristic (ROC) curves to identify optimal week 8 levels.</p><p><strong>Results: </strong>Amongst 58 children (19 < 40 kg, 81% bio-naïve, median (interquartile range [IQR]) follow-up 11.5 [7.6-16.0] months), the IV loading dose for those <40kg (median 9.1 [8.6-10.2] mg/kg; 253 (239-268) mg/m<sup>2</sup>) was greater than for those ≥40kg (median 6.1 [5.4-6.5] mg/kg; 218 ([78-237] mg/m<sup>2</sup>, <i>P</i> < .001). However, week 8 levels were similar (<i>P</i> = .26). This was most striking in those with low albumin. Of 34/58 (59%) without escalation to 4 weekly dosing, 43%, 35%, and 19% exhibited CSFR, biochemical CSFR, and MH, respectively, during established maintenance. Median week 8 levels were roughly 5-6 µg/g vs 7-10 µg/g in patients not achieving vs achieving favorable outcomes, while ROC analysis indicated levels 8-9 µg/mL were associated with improved outcomes.</p><p><strong>Conclusions: </strong>Children <40 kg required more IV ustekinumab (median 9 mg/kg; 250 mg/m<sup>2</sup>) to achieve similar week 8 levels as children ≥40kg receiving conventional adult 6 mg/kg weight-tiered induction. Higher week 8 levels were associated with favorable later outcomes.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag019"},"PeriodicalIF":1.8,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13016668/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147519842","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-03-11eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag018
Vipul Jairath, Theresa Hunter Gibble, Laurent Peyrin-Biroulet, Bruce E Sands, Fumihito Hirai, Toshifumi Hibi, Edward V Loftus, Raymond K Cross, Marijana Protic, Lai Shan Chan, Nathan Morris, Kristina Traxler, David T Rubin
{"title":"Impact of mirikizumab on patient-reported outcomes and quality of life in patients with Crohn's disease: results from the phase 2 SERENITY study.","authors":"Vipul Jairath, Theresa Hunter Gibble, Laurent Peyrin-Biroulet, Bruce E Sands, Fumihito Hirai, Toshifumi Hibi, Edward V Loftus, Raymond K Cross, Marijana Protic, Lai Shan Chan, Nathan Morris, Kristina Traxler, David T Rubin","doi":"10.1093/crocol/otag018","DOIUrl":"10.1093/crocol/otag018","url":null,"abstract":"<p><strong>Background: </strong>Mirikizumab is an anti-IL23p19 antibody that has shown efficacy in treating moderately to severely active Crohn's disease in a phase 2 study. We studied mirikizumab's impact on quality of life in these patients.</p><p><strong>Methods: </strong>Patients (<i>N</i> = 191) were randomized using a 2:1:1:2 allocation across 4 treatment arms (placebo, 200 mg, 600 mg, or 1000 mg mirikizumab, administered intravenously every 4 weeks [week 0, week 4, and week 8]). Patients who received mirikizumab and achieved ≥1-point improvement in Simple Endoscopic Score for Crohn's Disease at week 12 were rerandomized into double-blind maintenance to continue treatment with either intravenous assignment or 300 mg mirikizumab subcutaneous every 4 weeks to week 52. Non-improvers or placebo patients received 1000 mg mirikizumab until week 52. Patients with clinical benefit from the maintenance period received 300 mg subcutaneously to week 104. Quality of life and patient-reported outcomes were evaluated with the Inflammatory Bowel Disease Questionnaire, 36-Item Short-Form Health Survey Mental Component Summary and Physical Component Summary, Patient's Global Rating of Severity, and Abdominal Pain Numeric Rating Scale. Quality of life measures were evaluated up to week 104 and analyzed with a mixed model for repeated measures up to week 12 and descriptively afterward.</p><p><strong>Results: </strong>At week 12, all mirikizumab groups had improved quality of life and patient-reported outcome scores compared to placebo. These improvements were sustained through week 52 and week 104.</p><p><strong>Conclusions: </strong>Treatment with mirikizumab was associated with significantly improved quality of life and patient-reported disease severity sustained through week 104 in patients with moderately-to-severely active Crohn's disease in this phase 2 study (NCT02891226).</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag018"},"PeriodicalIF":1.8,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13017000/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147572433","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Transabdominal intestinal ultrasound versus transmural histopathological findings in severe ulcerative colitis requiring colectomy.","authors":"Hiromu Morikubo, Jun Miyoshi, Akimasa Hayashi, Haruka Komatsu, Hiromi Yonezawa, Minoru Matsuura, Junji Shibahara, Tadakazu Hisamatsu","doi":"10.1093/crocol/otag017","DOIUrl":"10.1093/crocol/otag017","url":null,"abstract":"<p><strong>Background: </strong>Transabdominal intestinal ultrasound (IUS) is a promising, non-invasive tool for monitoring ulcerative colitis (UC). This modality has the advantage of assessing intestinal inflammation transmurally, suggesting that UC can be considered a transmural disease. Determining what transabdominal IUS findings indicate in terms of histopathology would improve its value in assessing disease activity. However, associations between sonographic and histopathological findings have not yet been established for active UC. To address this gap, we investigated patients with active UC who underwent colectomy following IUS examination.</p><p><strong>Methods: </strong>Patients who underwent total colectomy for severe active UC within 1 week of undergoing transabdominal IUS at our facility between December 2020 and March 2023 were consecutively included in this study. Sonographic and histopathological findings were compared for each colonic segment in these patients.</p><p><strong>Results: </strong>Four patients underwent IUS 3-6 days before colectomy, which was performed due to insufficient response to medical treatment. IUS findings, particularly loss of bowel stratification and increased color Doppler signals, were associated with severe inflammation and vascular proliferation in the transmural colon, including the subserosa. Thickened muscularis propria was also observed in inflamed colonic segments; this may have contributed to the increased bowel wall thickness according to IUS.</p><p><strong>Conclusions: </strong>This is the first report comparing IUS findings and transmural pathological features in active UC. It provides an imaging atlas and clinical insights into the role of IUS in determining transmural histopathological inflammatory status in patients with active UC.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag017"},"PeriodicalIF":1.8,"publicationDate":"2026-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12985694/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147466488","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-28eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag016
Karen V MacDonald, Nikhil Pai, Carly Burow, Jennifer C deBruyn, Hien Q Huynh, Anthony Otley, Sharlene Rozario, Deborah A Marshall
{"title":"Balancing safety and effectiveness: parent preferences for fecal microbiota transplant and established therapies in pediatric inflammatory bowel disease-results of a multicenter Canadian study.","authors":"Karen V MacDonald, Nikhil Pai, Carly Burow, Jennifer C deBruyn, Hien Q Huynh, Anthony Otley, Sharlene Rozario, Deborah A Marshall","doi":"10.1093/crocol/otag016","DOIUrl":"10.1093/crocol/otag016","url":null,"abstract":"<p><strong>Background and aims: </strong>Treatment decision-making in pediatric inflammatory bowel disease (IBD) is complex, with many existing and emerging options. However, little is known about parent preferences for these therapies. This multi-center Canadian study provides the first quantitative data on parent preferences for pediatric IBD treatments and explores characteristics associated with differing preferences.</p><p><strong>Methods: </strong>We conducted a cross-sectional survey including a discrete choice experiment (DCE) with Canadian parents (n = 159) of children diagnosed with UC/IBD-U, recruited from four pediatric IBD clinics. The DCE assessed preferences across four treatment attributes: chance of clinical remission, severity and chance of known side effects, severity of rare unknown side effects, and mode of treatment delivery. Latent class modeling was used to explore preference heterogeneity.</p><p><strong>Results: </strong>Parents prioritized safety, particularly the risk of rare unknown side effects, followed by likelihood of remission. Latent class analysis identified two distinct groups: one most concerned about rare unknown side effects, and another prioritizing treatment effectiveness. Thirty-eight percent of parents were open to fecal microbiota transplant (FMT), an emerging therapy that uses donor stool to help restore gut microbiome health. Younger parents and those with children experiencing more severe disease and on multiple medications were more likely to accept FMT. Across the cohort, many parents were willing to trade off less desirable delivery modes or increased risk in exchange for better treatment outcomes.</p><p><strong>Conclusions: </strong>Parents value both safety and effectiveness in IBD treatment decisions. Recognizing these preferences may support shared decision-making, particularly when discussing novel therapies like FMT.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag016"},"PeriodicalIF":1.8,"publicationDate":"2026-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13007224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147510106","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-26eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag015
Yihao Li, Jiahe Li, Michael E Rothenberg, Horace Rhee, Jiameng Zhang, Seppi Lin, K T Park
{"title":"Impact of missing patient report outcomes in clinical trials for ulcerative colitis: Should we always assume treatment failure?","authors":"Yihao Li, Jiahe Li, Michael E Rothenberg, Horace Rhee, Jiameng Zhang, Seppi Lin, K T Park","doi":"10.1093/crocol/otag015","DOIUrl":"10.1093/crocol/otag015","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcomes (PRO) are key outcome measures in inflammatory bowel disease (IBD) trials. Typically, missing PRO data are imputed as treatment failures, even for patients completing trials with objective endpoints such as endoscopic data corroborating treatment effectiveness. This study investigated whether the final trial readout would change if PRO data imputation were more aligned with clinical practice.</p><p><strong>Methods: </strong>Post-hoc analyses from two negative ulcerative colitis phase 3 etrolizumab trials: LAUREL and HICKORY. Non-responder imputation (NRI), last observation carried forward (LOCF), and hybrid methods using multiple imputation were utilized to handle missing PRO data for study completers. Treatment effects (TE) on clinical remission were compared. Monte Carlo simulations were used to evaluate the performance of various imputation methods.</p><p><strong>Results: </strong>Among completers, 15% in LAUREL and 11% in HICKORY had missing PRO data at the end of the maintenance period. The majority of patients with only PRO missing were in etrolizumab arms, especially for endoscopic responders. NRI resulted in a 3%-5% decrease in TE estimates compared to LOCF and hybrid methods. Monte Carlo simulations confirmed that NRI can underestimate TEs and reduce power. While LOCF can mitigate this bias and power loss, the hybrid method produces the most unbiased and robust results.</p><p><strong>Conclusions: </strong>Appropriately handling missing PRO data in patients completing treatment can reduce bias and improve the validity and reliability of efficacy analysis, potentially enhancing the ability of detecting therapeutic effects. This strategy should be considered in future clinical trials of IBD.</p><p><strong>Clinical trial registration: </strong>LAUREL (NCT02165215) and HICKORY (NCT02100696).</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag015"},"PeriodicalIF":1.8,"publicationDate":"2026-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12989097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147467298","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-26eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag007
Anna Isabella Shanker Barclay, Caroline H T Hall, Carla Torres-Zegarra, Sofia Guelfand Warnken, Shannon White, Brad Constant
{"title":"Local prevalence and management of Janus kinase inhibitor-induced acne among adolescents with inflammatory bowel disease.","authors":"Anna Isabella Shanker Barclay, Caroline H T Hall, Carla Torres-Zegarra, Sofia Guelfand Warnken, Shannon White, Brad Constant","doi":"10.1093/crocol/otag007","DOIUrl":"10.1093/crocol/otag007","url":null,"abstract":"<p><strong>Background: </strong>Janus kinase inhibitors (JAKi), including tofacitinib and upadacitinib, are small-molecule medications effective in treating inflammatory bowel disease (IBD) and other immune-mediated disorders. In adult IBD clinical trials for JAKi, acne is a commonly reported adverse event. There are currently no data on the prevalence of acne in pediatric patients with IBD treated with JAKi. In this manuscript, we sought to estimate the local prevalence, characteristics, and treatment patterns of JAKi-induced acne among pediatric patients with IBD.</p><p><strong>Methods: </strong>We completed a retrospective chart review of children (age <18 years) treated with JAKi for IBD at Children's Hospital Colorado from 2019 to 2024. Demographics, IBD characteristics, and acne characteristics and treatment patterns were extracted from the electronic medical record.</p><p><strong>Results: </strong>Twelve of 60 (20%) patients treated with JAKi for IBD subsequently developed acne during JAKi treatment, three times greater than rates observed in adult randomized controlled trials. Over 50% of patients were referred to dermatology. The most common treatments used were topical retinoids (4 patients), benzoyl peroxide wash (3 patients), topical clindamycin (3 patients), and oral isotretinoin (2 patients). One patient required JAKi discontinuation given the severity of acne, while another had improved acne with decreased dosing.</p><p><strong>Conclusions: </strong>In this single-center cohort study, acne was a common adverse event among pediatric patients taking JAKi for IBD. Referral and treatment patterns in our cohort varied greatly, which demonstrates the need for a multidisciplinary approach and larger prospective studies to discern the prevalence, characteristics, and treatment response of JAKi-induced acne to inform risks and benefits.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag007"},"PeriodicalIF":1.8,"publicationDate":"2026-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12950282/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147344055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-20eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag013
Solomon Sasson, Itay Kalisky, Gregory Rosenfeld, Jeremy Liu Chen Kiow, Brian Bressler
{"title":"Erythema nodosum as a marker for objective disease activity in inflammatory bowel disease.","authors":"Solomon Sasson, Itay Kalisky, Gregory Rosenfeld, Jeremy Liu Chen Kiow, Brian Bressler","doi":"10.1093/crocol/otag013","DOIUrl":"10.1093/crocol/otag013","url":null,"abstract":"<p><strong>Background: </strong>Erythema nodosum (EN) is an inflammatory condition marked by tender, red nodules, typically on the extensor limbs. Though often linked to IBD activity, its association with objective markers like inflammatory labs or endoscopic findings remains unclear. This study examined the relationship between EN and objective inflammation in IBD patients.</p><p><strong>Methods: </strong>At a tertiary clinic with over 6500 patients, individuals with active EN were identified. Patients with active EN were identified, and symptomatic disease activity was assessed. Objective assessments included endoscopy, cross-sectional imaging (CT/MRI), fecal calprotectin, and CRP. Descriptive statistics compared objective and subjective disease activity in relation to EN.</p><p><strong>Results: </strong>Of 169 patients with documented EN, 95 had at least one objective assessment within our timeframe and were included. The mean age at EN presentation was 32 years; most had Crohn's disease (80%) and were female (75%). Among CD patients, 93% had colonic involvement and 32% had penetrating disease. A total of 77 (74%) patients had gastrointestinal symptoms at the time of EN presentation, and 84 (81%) had objective evidence of active disease. Endoscopy was performed in 66% of cases, with 58 patients (84%) showing active inflammation. Among CD patients, 53% had mucosal ulcerations, while 67% of UC patients had severe disease (Mayo E3).</p><p><strong>Conclusions: </strong>In this cohort, most patients presenting with EN had both symptomatic and objective signs of intestinal inflammation. These findings support the use of objective testing in IBD patients with EN and suggest EN may indicate a more severe or complicated disease course.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag013"},"PeriodicalIF":1.8,"publicationDate":"2026-02-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12958114/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147364484","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Association between serum leucine-rich alpha-2-glycoprotein levels and characteristic enteroclysis findings in small intestinal Crohn's disease.","authors":"Masayuki Fukata, Shu Kikuta, Kazuyo Okayama, Akira Sonoda, Soh Okano, Kiyohito Unuma","doi":"10.1093/crocol/otag012","DOIUrl":"10.1093/crocol/otag012","url":null,"abstract":"<p><strong>Introduction: </strong>Enteroclysis provides a whole picture of mucosal and wall-structural information that is advantageous in assessing small intestinal Crohn's disease (CD). Leucine-rich alpha-2-glycoprotein (LRG) is an acute-phase protein that has been shown to be increased in active CD. We sought to explore the association of LRG with the presence of typical CD findings in enteroclysis.</p><p><strong>Methods: </strong>Patients with small intestinal CD whose serum LRG and C-reactive protein (CRP) were measured within 30 days before or after enteroclysis were selected, and were categorized by the presence of longitudinal ulcer, cobblestone appearance, and stricture/narrowing. Levels of LRG were compared by the type and the extent of lesions. Detection performances of LRG and CRP were compared for the presence of each type of lesion.</p><p><strong>Results: </strong>Serum LRG levels were significantly higher in patients who had enteroclysis findings than patients with no findings (23.5 ± 9.2 vs. 12.8 ± 3.0 μg/dL, <i>P </i>< .00001). The level of LRG was not affected by disease extent or history of bowel resection. LRG over 16.3 μg/dL had good detection accuracy for the presence of CD lesions with an area under the receiver operating characteristic curve of 0.85 (95% confidence interval: 0.75-0.95). The association of LRG with the presence of CD-specific lesions was significantly higher than CRP, especially for the presence of stricture/narrowing (AUC: 0.82 vs. 0.67, <i>P </i>= .005) and longitudinal ulcer (AUC: 0.93 vs. 0.80, <i>P </i>= .017).</p><p><strong>Conclusion: </strong>Elevation of serum LRG is associated with the presence of typical CD lesions in the small intestine that may be found in entericlysis.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag012"},"PeriodicalIF":1.8,"publicationDate":"2026-02-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12962800/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147375834","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-16eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag011
Molly J Halligan, Aerin E Thompson, Destiny Docherty, Patricia Kelly, Emma Pryde, Cher Shiong Chuah, Rebecca Hall, Gwo-Tzer Ho
{"title":"Patient-led thematic analysis on the impact of living with inflammatory bowel disease: a contemporary appraisal of 415 patient-reported outcomes to improve care and research.","authors":"Molly J Halligan, Aerin E Thompson, Destiny Docherty, Patricia Kelly, Emma Pryde, Cher Shiong Chuah, Rebecca Hall, Gwo-Tzer Ho","doi":"10.1093/crocol/otag011","DOIUrl":"10.1093/crocol/otag011","url":null,"abstract":"<p><strong>Background: </strong>The conceptual context of wellbeing for people living with inflammatory bowel disease (IBD) is complex and encompasses many dimensions. Here, we employed a wholly patient-led analysis to provide a unique \"patient first\" narrative on wellbeing and IBD.</p><p><strong>Methods: </strong>Our report draws on data from a Wellbeing Survey led by the Glasgow and Edinburgh IBD Science team as part of the MUSIC IBD cohort study (www.musicstudy.uk) with over 1375 IBD respondents in 2023 from the United Kingdom and globally. Our public and patient involvement (PPI) group utilized unstructured patient-reported experiences and conducted a high-level topic analysis and based their own lived experience of IBD to explore and assimilate the 415 free-text responses on the priorities and unmet needs of our IBD participants. Within the PPI group, a transparent structure of patient-led analysis, identification of key topic areas, discussion, and finally writing was agreed at the start of the project with minimal input from the clinical team.</p><p><strong>Results: </strong>The analysis provided an in-depth exploration of several key themes affecting wellbeing in IBD patients. Of interest, the PPI group discussed and explored themes such as \"what does remission mean?,\" access to care, expectations of self-management, mental and women's health. The patient narratives highlighted the variability of IBD experiences, the interconnectedness of these issues, and the importance of holistic, patient-centric approaches to care. The findings emphasize the necessity for improved support, both within and beyond healthcare settings. The findings are written and presented by our PPI group to provide viewpoints that resonate directly with people living with IBD.</p><p><strong>Conclusion: </strong>Our patient-led research approach demonstrates that allowing patients to lead in analysis (\"taking the reins\") and reporting provides deeper and impactful insights into IBD experiences. By shifting the lens of analysis via the patient when integrating their perspectives into wellbeing. This study thus, advocates for a patient-dominant approach to research and care, which can provide unique insights into ways to improve outcomes and to address the complexities of living with IBD.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag011"},"PeriodicalIF":1.8,"publicationDate":"2026-02-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12948929/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147324859","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Crohn's & Colitis 360Pub Date : 2026-02-13eCollection Date: 2026-01-01DOI: 10.1093/crocol/otag005
Rafael Martin-Masot, Marta Velasco Rodríguez-Belvís, Gemma Pujol Muncunill, Laura Palomino, César Sánchez Sánchez, Javier Martín de Carpi, Víctor Manuel Navas-López
{"title":"Fatigue in pediatric patients with inflammatory bowel disease: a multicenter study by the SEGHNP.","authors":"Rafael Martin-Masot, Marta Velasco Rodríguez-Belvís, Gemma Pujol Muncunill, Laura Palomino, César Sánchez Sánchez, Javier Martín de Carpi, Víctor Manuel Navas-López","doi":"10.1093/crocol/otag005","DOIUrl":"10.1093/crocol/otag005","url":null,"abstract":"<p><strong>Background: </strong>Fatigue is a common and disabling symptom in pediatric inflammatory bowel disease (IBD), often persisting even during clinical remission and reflecting a multifactorial origin. Despite its significant impact on patients' lives, it remains under-recognized. The IMPACT-III and IMPACT-III-P questionnaires facilitate fatigue assessment within a biopsychosocial framework of health-related quality of life (HRQOL).</p><p><strong>Methods: </strong>In this multicenter study supported by the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP), 382 patients aged 10-17 years and their caregivers from 37 hospitals completed the IMPACT-III and IMPACT-III-P questionnaires between February 2021 and June 2023. Fatigue-related items were analyzed, and predictive models were developed using univariate and multivariate logistic regression.</p><p><strong>Results: </strong>A total of 370 patient questionnaires were included in the analysis. The median age at diagnosis was 11.3 years (interquartile range [IQR] 8.7-13.3), and at assessment, 14.4 years (IQR 12.4-16.1). Males represented 56% of the cohort, and 61.1% had Crohn's disease. Treatments included immunosuppressants (44.6%), 5-ASA (33.7%), biologics (30.8%), corticosteroids (6%), and other therapies (27.8%). Fatigue was reported by 81.1% of patients, including 77.5% of those in clinical remission. Severe fatigue was significantly associated with female sex, older age, active disease, and dietary treatment. Conversely, absence of fatigue was independently associated with male sex, earlier pubertal stage, and not receiving biologics. Notable discrepancies were observed between patient and caregiver perceptions of energy levels. Fatigue correlated with significantly lower HRQOL scores across all IMPACT-III domains. In Crohn's disease, the strongest impacts were observed in the social and systemic domains, whereas in ulcerative colitis, emotional and physical domains were more affected. Patients without severe fatigue consistently scored higher in all domains.</p><p><strong>Conclusion: </strong>Fatigue is a highly prevalent and multifactorial symptom in pediatric IBD, with a marked negative impact on quality of life, even in clinical remission. The IMPACT-III and IMPACT-III-P questionnaires are valuable tools for its assessment and highlight the need for routine, systematic evaluation of fatigue to guide holistic and individualized management strategies.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"8 1","pages":"otag005"},"PeriodicalIF":1.8,"publicationDate":"2026-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13006060/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147503353","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}