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Patients' attitudes to disease prevention in inflammatory bowel disease: a US-based survey. 炎症性肠病患者对疾病预防的态度:一项美国调查
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2026-02-03 eCollection Date: 2026-01-01 DOI: 10.1093/crocol/otag004
Mary Harkins-Schwarz, Catarina Bravo, Manasi Agarawal, Jean Frederic Colombel, Ryan Ungaro, Laura Wingate, Joana Torres, Alan Moss

Background: Recent advances in biomarkers have identified at-risk cohorts for inflammatory bowel disease (IBD), and potential interception strategies to prevent disease onset are in progress. We sought to understand patient and family members' views on IBD prevention, as they are key stakeholders in future adoption of prevention recommendations.

Methods: A workgroup of patient advocacy organizations and researchers adapted a survey for completion by the IBD community residing in the United States. All responses were anonymous. Descriptive results, and comparisons, were undertaken of pooled responses.

Results: One thousand five hundred forty-five respondents completed the survey. Most respondents (93%, n = 1,421) would be interested in taking a test to predict their or their family's risk of developing IBD in the future. Almost all respondents were interested in taking preventative treatment to prevent IBD; 40% expressed an unconditional interest in the treatment, but 59% reported it would be dependent on the risks and effectiveness of the treatment. Lifestyle measures were the most preferred option to prevent IBD. There was no significant difference in proportion of patients who were willing to take a test or prevention treatment based on relationship to IBD (have IBD, first-degree relative of someone who has IBD, or parent of someone with IBD).

Conclusions: Most people affected by IBD in the United States agree with taking proactive measures to prevent IBD. A lifestyle intervention (diet, exercise) is favored over a pharmaceutical approach by these respondents. Relationship to IBD did not influence the magnitude of the agreement.

背景:生物标志物的最新进展已经确定了炎症性肠病(IBD)的高危人群,并且正在研究预防疾病发作的潜在拦截策略。我们试图了解患者和家庭成员对IBD预防的看法,因为他们是未来采用预防建议的关键利益相关者。方法:由患者倡导组织和研究人员组成的工作组改编了一项由居住在美国的IBD社区完成的调查。所有的回答都是匿名的。描述性结果和比较,进行了汇总反应。结果:一千五百四十五名受访者完成了调查。大多数受访者(93%,n = 1421)有兴趣通过测试来预测他们或他们的家人未来患IBD的风险。几乎所有的应答者都有兴趣采取预防性治疗来预防IBD;40%的人表示对治疗无条件感兴趣,但59%的人表示这将取决于治疗的风险和有效性。生活方式措施是预防IBD的最佳选择。根据与IBD的关系(患有IBD、IBD患者的一级亲属或IBD患者的父母),愿意接受检查或预防治疗的患者比例没有显著差异。结论:在美国,大多数受IBD影响的人都同意采取积极措施预防IBD。生活方式干预(饮食、运动)比药物治疗更受受访者青睐。与IBD的关系不影响协议的大小。
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引用次数: 0
How to write an inflammatory bowel disease surgical report. 如何写炎症性肠病手术报告。
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2026-01-20 eCollection Date: 2026-01-01 DOI: 10.1093/crocol/otag003
Abel Botelho Quaresma, Rafaela Araujo Molteni Moretti, Paulo Gustavo Kotze

The development of detailed surgical reports is essential for the effective management of inflammatory bowel disease, including Crohn's disease (CD) and ulcerative colitis. These reports facilitate postoperative care, multidisciplinary planning, and are critical for studies on surgical outcomes and complications. A well-structured report should include information before, during, and after surgery. Preoperative factors include team identification, surgical plan, anesthesia, patient positioning, estimated blood loss, and urinary output data. During surgery, documentation should cover unexpected findings, abnormal blood loss, and any anesthesia changes. Postoperatively, the patient's condition and transfer destination should be described. For perianal CD, reports should include details about fistulas, abscesses, and techniques such as fistulotomy and seton placement. In abdominal resections for CD, findings such as adhesions, associated complications, and disease characteristics must be outlined. For ulcerative colitis, reports should emphasize the extent of inflammation, colectomy techniques, details of anastomoses, and perfusion assessment. These structured reports are indispensable for improving care and long-term outcomes, reinforcing their importance in the evolving multidisciplinary management of inflammatory bowel disease.

详细的手术报告的发展是必不可少的有效管理炎症性肠病,包括克罗恩病(CD)和溃疡性结肠炎。这些报告有助于术后护理,多学科规划,对手术结果和并发症的研究至关重要。一份结构良好的报告应该包括手术前、手术中和手术后的信息。术前因素包括团队识别、手术计划、麻醉、患者体位、估计失血量和尿量数据。手术过程中,记录应包括意外发现、异常失血和任何麻醉改变。术后,应描述患者的病情和转移目的地。对于肛周CD,报告应包括瘘管、脓肿的细节,以及瘘管切开术和缝合线放置等技术。在腹腔切除CD时,必须概述粘连、相关并发症和疾病特征等发现。对于溃疡性结肠炎,报告应强调炎症程度、结肠切除术技术、吻合口细节和灌注评估。这些结构化的报告对于改善护理和长期结果是必不可少的,加强了它们在炎症性肠病不断发展的多学科管理中的重要性。
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引用次数: 0
Awareness of inflammatory bowel disease-associated colorectal cancer risk and its management in patients with inflammatory bowel disease: a systematic review. 炎性肠病患者对炎症性肠病相关结直肠癌风险的认识及其管理:一项系统综述
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2026-01-12 eCollection Date: 2026-01-01 DOI: 10.1093/crocol/otag001
Fiza Khan, Christine Norton, Wladyslawa Czuber-Dochan

Background: Inflammatory bowel disease (IBD) is associated with an increased risk of colorectal cancer (CRC). While several studies have explored patients' general knowledge of IBD, less is known about their awareness of CRC risk and its management. This systematic review aimed to synthesize the available evidence on IBD patients' awareness of CRC risk and its related management strategies.

Methods: Medline, EMBASE, and PubMed databases were searched from inception to November 2023. All study designs and publication types were considered. Non-English studies and those assessing only general IBD knowledge were excluded. The appraisal tool for cross-sectional studies (AXIS) was used to assess the quality of studies.

Results: Twenty-three studies (17 papers and 6 conference abstracts), including 4674 participants (2481 with ulcerative colitis, 53.5% females) were included. Overall, 18 studies assessed CRC risk knowledge, 7 reported attitudes toward cancer screening, and 8 explored knowledge or attitude regarding colectomy for dysplasia. Patients demonstrated moderate awareness of CRC risk, limited knowledge of risk factors, and moderate levels of fear regarding this complication. Awareness of the diagnostic role of colonoscopy was high, but attitudes toward the procedure were mixed, largely due to concerns about complications. Awareness of appropriate screening initiation and willingness to undergo colectomy for dysplasia, regardless of the risk level, were generally low.

Conclusions: Evidence on IBD patients' awareness of CRC risk and its management remains limited, restricting firm conclusion about the extent of knowledge and educational needs. Further research is required to better characterize patients' understanding and to inform targeted education strategies.

背景:炎症性肠病(IBD)与结直肠癌(CRC)风险增加相关。虽然有几项研究探讨了患者对IBD的一般认识,但他们对结直肠癌风险及其管理的认识却很少。本系统综述旨在综合IBD患者CRC风险意识及相关管理策略的现有证据。方法:检索自成立至2023年11月的Medline、EMBASE和PubMed数据库。考虑了所有的研究设计和出版物类型。非英语研究和仅评估一般IBD知识的研究被排除在外。采用横断面研究评估工具(AXIS)评估研究质量。结果:纳入23项研究(17篇论文和6篇会议摘要),共纳入4674名受试者(其中溃疡性结肠炎2481例,女性53.5%)。总体而言,18项研究评估了结直肠癌风险知识,7项研究报告了对癌症筛查的态度,8项研究探讨了对结肠切除术治疗不典型增生的知识或态度。患者表现出对结直肠癌风险的中度认知,对危险因素的了解有限,对这种并发症的恐惧程度中等。人们对结肠镜检查诊断作用的认识很高,但对该手术的态度不一,主要是由于对并发症的担忧。无论风险水平如何,对开始适当筛查和接受结肠切除术的意愿的认识普遍较低。结论:关于IBD患者对结直肠癌风险的认知及其管理的证据仍然有限,限制了对知识程度和教育需求的确切结论。需要进一步的研究来更好地描述患者的理解并为有针对性的教育策略提供信息。
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引用次数: 0
Young Adults with Inflammatory Bowel Disease in the US Experience Gaps in Healthcare Access and Financial Stress: Additional Findings from a Recent Survey by the Crohn's & Colitis Foundation. 美国患有炎症性肠病的年轻人在医疗保健获取和财务压力方面存在差距:克罗恩病和结肠炎基金会最近调查的额外发现。
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2026-01-08 eCollection Date: 2026-01-01 DOI: 10.1093/crocol/otaf066
Ross M Maltz, Ariel A Jordan, Shubha Bhat, Mary Harkins-Schwarz, Orna G Ehrlich

Background: Young adults with chronic conditions are at increased risk for active disease and for poor adherence, resulting in increased emergency department utilization and hospitalizations. We aimed to evaluate whether young adults with inflammatory bowel disease (IBD) experienced more healthcare access challenges and financial distress compared to adults and pediatric patients.

Methods: A survey developed by the Crohn's & Colitis Foundation was electronically disseminated to adults with IBD and caregivers across the United States to assess healthcare access and financial challenges. Analyses were completed to evaluate differences across patient age groups (caregivers on behalf of pediatric patients <18 years, young adults 18-25 years, and adults 26-64 years) using Chi square or Fisher's exact tests.

Results: Of 1781 respondents (77% adult, 12.9% young adult, and 10.1% pediatric caregivers), there were no significant differences between groups in obtaining insurance approval and experiencing adverse health events due to treatment delays. However, young adults were more likely to experience step therapy mandates and less likely to know what questions to ask their insurer if experiencing coverage problems compared to adult and pediatric patients' caregivers. Additionally, young adult patients were more likely to take on an extra job or work more hours to afford their healthcare or insurance costs related to IBD.

Conclusion: Additional analysis from the Crohn's & Colitis Foundation access assessment highlights the need for more resources and support in navigating healthcare access for young adult patients with IBD.

背景:患有慢性疾病的年轻人患活动性疾病的风险增加,依从性差,导致急诊使用率和住院率增加。我们旨在评估与成人和儿科患者相比,患有炎症性肠病(IBD)的年轻成年人是否经历了更多的医疗保健获取挑战和经济困境。方法:由克罗恩和结肠炎基金会开发的一项调查以电子方式传播给美国各地的IBD成年患者和护理人员,以评估医疗保健可及性和财务挑战。结果:在1781名受访者中(77%为成年人,12.9%为年轻人,10.1%为儿科护理人员),在获得保险批准和因治疗延误而经历不良健康事件方面,各组间无显著差异。然而,与成人和儿科患者的护理人员相比,年轻人更有可能经历阶梯治疗任务,如果遇到保险问题,他们不太可能知道该向保险公司询问什么问题。此外,年轻的成年患者更有可能承担额外的工作或工作更长时间来支付与IBD相关的医疗或保险费用。结论:克罗恩和结肠炎基金会可及性评估的进一步分析强调,需要更多的资源和支持来引导年轻成年IBD患者的医疗可及性。
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引用次数: 0
Post-marketing Surveillance of Tofacitinib in Patients With Ulcerative Colitis in Japan: A Post Hoc Analysis of Safety and Effectiveness by Prior Biologic Status. 托法替尼在日本溃疡性结肠炎患者的上市后监测:基于先前生物学状态的安全性和有效性事后分析
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-11-22 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf065
Katsuyoshi Matsuoka, Satoshi Motoya, Shinichiro Shinzaki, Yohei Mikami, Chihiro Adachi, Shoko Arai, Yutaka Endo, Keiko Sato, Hirotoshi Yuasa, Yasushi Mizuno, Tadakazu Hisamatsu

Background: This post hoc analysis of a 60-week post-marketing surveillance (PMS) study in Japan assessed tofacitinib safety and effectiveness in patients with ulcerative colitis (UC), stratified by prior biologic exposure.

Methods: The PMS study registered all patients with UC receiving tofacitinib in Japan (May 2018-June 2021). Outcomes included the proportion of patients with clinically important adverse events (AEs), incidence rates (IR; unique patients with events/100 patient-years of exposure) of clinically important AEs, reasons for discontinuation, and effectiveness (partial Mayo score remission). Patients were stratified by prior biologic exposure (biologic-experienced/biologic-naïve). Prior biologics included infliximab, adalimumab, golimumab, and others (eg, ustekinumab/vedolizumab).

Results: Overall, 1367 biologic-experienced and 615 biologic-naïve patients were included. More biologic-naïve versus biologic-experienced patients (30.6% vs. 16.9%) had disease duration <2 years. Proportions of AEs were similar between groups, although IRs (95% confidence intervals) were numerically higher in biologic-experienced versus biologic-naïve patients for herpes zoster (HZ; 6.77 [5.30, 8.53] vs. 4.10 [2.50, 6.33]) and serious infections (SI; 1.92 [1.19, 2.94] vs. 0.60 [0.12, 1.77]). Insufficient clinical response (biologic-experienced: 53.3%; biologic-naïve: 38.9%) was the primary reason for discontinuation. At week 60, remission rates were 63.07% for biologic-naïve patients and 56.37% for biologic-experienced patients.

Conclusions: Safety was generally similar between biologic-experienced and biologic-naïve patients, although HZ and SI IRs were numerically higher in biologic-experienced patients. Remission rates were numerically higher in biologic-naïve versus biologic-experienced patients, although differences were small. Discontinuation was mostly due to insufficient clinical response. Missing concomitant corticosteroid/tofacitinib dose data and endoscopic assessment might limit the analysis.

Clinicaltrialsgov: NCT03643211.

背景:这项对日本60周上市后监测(PMS)研究的事后分析评估了托法替尼在溃疡性结肠炎(UC)患者中的安全性和有效性,并按既往生物暴露分层。方法:PMS研究登记了日本所有接受托法替尼治疗的UC患者(2018年5月至2021年6月)。结果包括临床重要不良事件(ae)患者的比例、临床重要不良事件发生率(IR;唯一发生事件的患者/100患者-年暴露)、停药原因和有效性(部分梅奥评分缓解)。患者按既往生物暴露(生物经验/biologic-naïve)分层。先前的生物制剂包括英夫利昔单抗,阿达木单抗,戈利姆单抗和其他(例如,ustekinumab/vedolizumab)。结果:总共纳入1367例有生物学经验的患者和615例biologic-naïve患者。结论:安全性在具有生物学经验的患者和具有生物学经验的患者之间大致相似,尽管具有生物学经验的患者的HZ和SI ir在数值上更高。biologic-naïve患者的缓解率高于生物学经验患者,尽管差异很小。停药主要是由于临床反应不足。缺少伴随皮质类固醇/托法替尼剂量数据和内窥镜评估可能限制分析。Clinicaltrialsgov: NCT03643211。
{"title":"Post-marketing Surveillance of Tofacitinib in Patients With Ulcerative Colitis in Japan: A Post Hoc Analysis of Safety and Effectiveness by Prior Biologic Status.","authors":"Katsuyoshi Matsuoka, Satoshi Motoya, Shinichiro Shinzaki, Yohei Mikami, Chihiro Adachi, Shoko Arai, Yutaka Endo, Keiko Sato, Hirotoshi Yuasa, Yasushi Mizuno, Tadakazu Hisamatsu","doi":"10.1093/crocol/otaf065","DOIUrl":"10.1093/crocol/otaf065","url":null,"abstract":"<p><strong>Background: </strong>This post hoc analysis of a 60-week post-marketing surveillance (PMS) study in Japan assessed tofacitinib safety and effectiveness in patients with ulcerative colitis (UC), stratified by prior biologic exposure.</p><p><strong>Methods: </strong>The PMS study registered all patients with UC receiving tofacitinib in Japan (May 2018-June 2021). Outcomes included the proportion of patients with clinically important adverse events (AEs), incidence rates (IR; unique patients with events/100 patient-years of exposure) of clinically important AEs, reasons for discontinuation, and effectiveness (partial Mayo score remission). Patients were stratified by prior biologic exposure (biologic-experienced/biologic-naïve). Prior biologics included infliximab, adalimumab, golimumab, and others (eg, ustekinumab/vedolizumab).</p><p><strong>Results: </strong>Overall, 1367 biologic-experienced and 615 biologic-naïve patients were included. More biologic-naïve versus biologic-experienced patients (30.6% vs. 16.9%) had disease duration <2 years. Proportions of AEs were similar between groups, although IRs (95% confidence intervals) were numerically higher in biologic-experienced versus biologic-naïve patients for herpes zoster (HZ; 6.77 [5.30, 8.53] vs. 4.10 [2.50, 6.33]) and serious infections (SI; 1.92 [1.19, 2.94] vs. 0.60 [0.12, 1.77]). Insufficient clinical response (biologic-experienced: 53.3%; biologic-naïve: 38.9%) was the primary reason for discontinuation. At week 60, remission rates were 63.07% for biologic-naïve patients and 56.37% for biologic-experienced patients.</p><p><strong>Conclusions: </strong>Safety was generally similar between biologic-experienced and biologic-naïve patients, although HZ and SI IRs were numerically higher in biologic-experienced patients. Remission rates were numerically higher in biologic-naïve versus biologic-experienced patients, although differences were small. Discontinuation was mostly due to insufficient clinical response. Missing concomitant corticosteroid/tofacitinib dose data and endoscopic assessment might limit the analysis.</p><p><strong>Clinicaltrialsgov: </strong>NCT03643211.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"7 4","pages":"otaf065"},"PeriodicalIF":1.8,"publicationDate":"2025-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12712959/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145803083","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}
引用次数: 0
Successful Collection of Patient-Reported Outcomes Shows Improvement in Quality of Life, Depression, and Disease Activity among Patients with Inflammatory Bowel Disease: A Real-World Study. 成功收集患者报告的结果显示炎症性肠病患者的生活质量、抑郁和疾病活动得到改善:一项真实世界的研究
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-11-13 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf064
Cihang Gu, Audrey Bennett, Justin Bachmann, David A Schwartz, Dawn Beaulieu, Elizabeth Scoville, Robin Dalal, Baldeep Pabla, Allison McCoy, James C Slaughter, Sara Horst

Introduction: Patient-reported outcomes (PRO), including patient disease activity scores, quality of life, and depressive symptoms, are increasingly being used for clinical care in patients with inflammatory bowel disease (IBD). However, little is known about the performance of PROs over time in a real-world setting.

Methods: PROs were collected from a tertiary care IBD center from the electronic medical records (EMR) from 2018 to 2020. Quality of life was measured with the Simple Inflammatory Bowel Disease Questionnaire (SIBDQ). Disease activity was measured using the Harvey Bradshaw Index (HBI) for Crohn's disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). Depressive symptoms were measured using the Patient Health Questionnaire-8 (PHQ-8).

Results: PRO collection rate from 1373 patients was 88%. PHQ and SIBDQ were highly correlated (.718, p [Pearson's coefficient] < .05). HBI and PHQ-8 (.528, P < .05) and SIBDQ (-.676, P < .05) were moderately correlated. For CD patients, age 40-65, corticosteroid use and psychiatric medication use were associated with lower HBI and SIBDQ and higher PHQ scores. Age 40-65, corticosteroid use, and psychiatric medication use were associated with lower SCCAI and SIBDQ and higher PHQ-8 scores for CD and UC patients. Mean change [95% CI] increased for SIBDQ by 2.9 [2.3 to 3.6] in CD and 4.7 [3.8 to 5.6] in UC. Mean change [95% CI] decreased for PHQ-8: -1.0 [-1.3 to -.8] in CD and -1.7 [-2.2 to -1.3] in UC. This remained significant in both cognitive and somatic subscales.

Conclusion: High rate of PRO collection was successful using EMR implementation in a tertiary care clinic setting. Corticosteroid use and psychiatric medication use were associated with worse disease activity, depressive symptoms and quality of life scores. Moreover, PROs demonstrated depressive symptoms (both cognitive and somatic subscales), and quality of life symptom scores improved over time.

患者报告的预后(PRO),包括患者疾病活动评分、生活质量和抑郁症状,越来越多地被用于炎症性肠病(IBD)患者的临床护理。然而,对于pro在真实环境中的性能,我们所知甚少。方法:收集某三级IBD中心2018 - 2020年电子病历(EMR)的PROs。使用单纯性炎症性肠病问卷(SIBDQ)测量生活质量。用哈维·布拉德肖指数(HBI)测定克罗恩病(CD),用单纯临床结肠炎活动指数(SCCAI)测定溃疡性结肠炎(UC)。使用患者健康问卷-8 (PHQ-8)测量抑郁症状。结果:1373例患者PRO采集率为88%。PHQ与SIBDQ高度相关。结论:在三级保健诊所环境中,使用电子病历的PRO采集成功率高。皮质类固醇的使用和精神药物的使用与较差的疾病活动性、抑郁症状和生活质量评分相关。此外,赞成者表现出抑郁症状(认知和躯体亚量表),生活质量症状评分随着时间的推移而改善。
{"title":"Successful Collection of Patient-Reported Outcomes Shows Improvement in Quality of Life, Depression, and Disease Activity among Patients with Inflammatory Bowel Disease: A Real-World Study.","authors":"Cihang Gu, Audrey Bennett, Justin Bachmann, David A Schwartz, Dawn Beaulieu, Elizabeth Scoville, Robin Dalal, Baldeep Pabla, Allison McCoy, James C Slaughter, Sara Horst","doi":"10.1093/crocol/otaf064","DOIUrl":"10.1093/crocol/otaf064","url":null,"abstract":"<p><strong>Introduction: </strong>Patient-reported outcomes (PRO), including patient disease activity scores, quality of life, and depressive symptoms, are increasingly being used for clinical care in patients with inflammatory bowel disease (IBD). However, little is known about the performance of PROs over time in a real-world setting.</p><p><strong>Methods: </strong>PROs were collected from a tertiary care IBD center from the electronic medical records (EMR) from 2018 to 2020. Quality of life was measured with the Simple Inflammatory Bowel Disease Questionnaire (SIBDQ). Disease activity was measured using the Harvey Bradshaw Index (HBI) for Crohn's disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). Depressive symptoms were measured using the Patient Health Questionnaire-8 (PHQ-8).</p><p><strong>Results: </strong>PRO collection rate from 1373 patients was 88%. PHQ and SIBDQ were highly correlated (.718, <i>p</i> [Pearson's coefficient] < .05). HBI and PHQ-8 (.528, <i>P</i> < .05) and SIBDQ (-.676, <i>P</i> < .05) were moderately correlated. For CD patients, age 40-65, corticosteroid use and psychiatric medication use were associated with lower HBI and SIBDQ and higher PHQ scores. Age 40-65, corticosteroid use, and psychiatric medication use were associated with lower SCCAI and SIBDQ and higher PHQ-8 scores for CD and UC patients. Mean change [95% CI] increased for SIBDQ by 2.9 [2.3 to 3.6] in CD and 4.7 [3.8 to 5.6] in UC. Mean change [95% CI] decreased for PHQ-8: -1.0 [-1.3 to -.8] in CD and -1.7 [-2.2 to -1.3] in UC. This remained significant in both cognitive and somatic subscales.</p><p><strong>Conclusion: </strong>High rate of PRO collection was successful using EMR implementation in a tertiary care clinic setting. Corticosteroid use and psychiatric medication use were associated with worse disease activity, depressive symptoms and quality of life scores. Moreover, PROs demonstrated depressive symptoms (both cognitive and somatic subscales), and quality of life symptom scores improved over time.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"7 4","pages":"otaf064"},"PeriodicalIF":1.8,"publicationDate":"2025-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12687582/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145721534","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}
引用次数: 0
The Dedicated Inflammatory Bowel Disease Nurse, If You Know Them, You Love Them: Survey of the Italian IBD Patients' Association. 专门的炎症性肠病护士,如果你认识他们,你就爱他们:意大利IBD患者协会的调查。
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-11-11 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf063
Daniele Napolitano, Franco Scaldaferri, Salvo Leone, Enrica Previtali, Gionata Fiorino, Flavio Caprioli, Massimo Claudio Fantini, Simona Radice, Greta Lorenzon, Elisa Schiavoni

Introduction: Inflammatory bowel diseases (IBDs) are chronic conditions that negatively influence the quality of life of affected patients. IBD nurses are an essential part of the multidisciplinary team managing patients with IBD. Given the lack of studies evaluating the role of IBD nurses, this study aimed to assess the patient's perspective regarding the role and competencies of the IBD nurse.

Methods: A cross-sectional study was conducted between October and November 2024, using an online survey. The main inclusion criteria were being over 18 years old and having an established diagnosis of IBD. Subjects who fulfilled these criteria were invited to participate via email from the Italian IBD organization AMICI ITALIA. The questionnaire used for the survey, developed ad-hoc according to N-ECCO guidelines, was structured into 3 thematic sections: demographic and clinical information, patient-nurse interaction, and nursing competencies.

Results: Most patients (69.7%) reported excellent relationships with their IBD nurse, emphasizing the importance of trust in disease management. Those who could identify their dedicated IBD nurse expressed higher satisfaction regarding empathy, communication, and the nurse's influence on their treatment journey compared to those who could not identify their nurse, illustrating the positive impact the nurse had on their care. Similarly, patients who recognized their nurse demonstrated greater confidence in the nurse's competence.

Conclusion: This study emphasized the crucial role of the IBD nurse in the care journey of IBD patients. Although most patients reported an excellent relationship with their IBD nurse, many still struggle to identify their nurse. Larger studies are needed to confirm these findings further.

简介:炎症性肠病(IBDs)是一种慢性疾病,会对患者的生活质量产生负面影响。IBD护士是管理IBD患者的多学科团队的重要组成部分。鉴于缺乏评估IBD护士角色的研究,本研究旨在评估患者对IBD护士角色和能力的看法。方法:采用横断面研究,于2024年10月至11月进行在线调查。主要入选标准是年龄在18岁以上,并且有明确的IBD诊断。意大利IBD组织AMICI ITALIA通过电子邮件邀请符合这些标准的受试者参加。调查使用的问卷是根据N-ECCO指南特别制定的,分为3个主题部分:人口统计和临床信息、患者-护士互动和护理能力。结果:大多数患者(69.7%)报告与IBD护士的关系良好,强调了信任在疾病管理中的重要性。与那些无法识别护士的人相比,那些能够识别出他们专门的IBD护士的人在移情、沟通和护士对他们治疗过程的影响方面表现出更高的满意度,这表明护士对他们的护理产生了积极的影响。同样,认识护士的病人对护士的能力表现出更大的信心。结论:本研究强调了IBD护士在IBD患者护理过程中的关键作用。尽管大多数患者报告与他们的IBD护士有良好的关系,但许多人仍然难以确定他们的护士。需要更大规模的研究来进一步证实这些发现。
{"title":"The Dedicated Inflammatory Bowel Disease Nurse, If You Know Them, You Love Them: Survey of the Italian IBD Patients' Association.","authors":"Daniele Napolitano, Franco Scaldaferri, Salvo Leone, Enrica Previtali, Gionata Fiorino, Flavio Caprioli, Massimo Claudio Fantini, Simona Radice, Greta Lorenzon, Elisa Schiavoni","doi":"10.1093/crocol/otaf063","DOIUrl":"10.1093/crocol/otaf063","url":null,"abstract":"<p><strong>Introduction: </strong>Inflammatory bowel diseases (IBDs) are chronic conditions that negatively influence the quality of life of affected patients. IBD nurses are an essential part of the multidisciplinary team managing patients with IBD. Given the lack of studies evaluating the role of IBD nurses, this study aimed to assess the patient's perspective regarding the role and competencies of the IBD nurse.</p><p><strong>Methods: </strong>A cross-sectional study was conducted between October and November 2024, using an online survey. The main inclusion criteria were being over 18 years old and having an established diagnosis of IBD. Subjects who fulfilled these criteria were invited to participate via email from the Italian IBD organization AMICI ITALIA. The questionnaire used for the survey, developed ad-hoc according to N-ECCO guidelines, was structured into 3 thematic sections: demographic and clinical information, patient-nurse interaction, and nursing competencies.</p><p><strong>Results: </strong>Most patients (69.7%) reported excellent relationships with their IBD nurse, emphasizing the importance of trust in disease management. Those who could identify their dedicated IBD nurse expressed higher satisfaction regarding empathy, communication, and the nurse's influence on their treatment journey compared to those who could not identify their nurse, illustrating the positive impact the nurse had on their care. Similarly, patients who recognized their nurse demonstrated greater confidence in the nurse's competence.</p><p><strong>Conclusion: </strong>This study emphasized the crucial role of the IBD nurse in the care journey of IBD patients. Although most patients reported an excellent relationship with their IBD nurse, many still struggle to identify their nurse. Larger studies are needed to confirm these findings further.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"7 4","pages":"otaf063"},"PeriodicalIF":1.8,"publicationDate":"2025-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12659860/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145647736","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}
引用次数: 0
Real-World Effectiveness of Risankizumab in Crohn's Disease: Outcome Data for an IL-23 Inhibitor from the Middle East. 利桑单抗在克罗恩病中的实际有效性:来自中东的IL-23抑制剂的结局数据
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-11-09 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf062
Mohamed Nasir Alzaabi, Thaer Khaleel Swaid, Hosameldin Abdelrahman Ahmed, Maryam A Alahmad, Nadeen Mamon Omar, Kishore Kumar Chitra Kumar, Enas Fouad Ahmed, Talha A Malik, Mohammed Nabil Quraishi

Introduction: Crohn's disease (CD) in the Middle East is often aggressive, yet regional patients are underrepresented in pivotal trials for new therapies. This study is the first real-world evaluation of risankizumab's effectiveness, safety, and dose optimization in a predominantly Emirati cohort with moderate-to-severe CD.

Methods: This prospective cohort included 60 UAE patients with moderate-to-severe CD initiating risankizumab. Endpoints included clinical remission (CDAI <150) and biochemical remission (normalised C-reactive protein <5 mg/L and faecal calprotectin <250 µg/g), assessed post-induction (weeks 12-20) and at maintenance (10-14 months). Logistic regression models were used to identify predictors of remission and the need for dose intensification.

Results: The median age was 33 years, and 61.7% were advanced therapy (AT)-exposed. Post-induction, clinical remission was achieved in 46.7% of patients, with significantly higher rates in AT-naïve vs AT-exposed patients (69.6% vs 32.4%, P = .011). Biochemical remission was achieved in 53.3% overall, again favouring the AT-naïve group (78.3% vs 37.8%, P = 0.005). At maintenance (n = 48), clinical and biochemical remission rates were 72.9% and 70.8%, respectively. Later-line risankizumab use was a significiant predictor of lower odds of post-induction remission (OR 0.27, P = .001). In AT-exposed patients, prior ustekinumab exposure was associated with lower remission rates (OR 0.11, P = .021) and a higher likelihood of dose intensification (OR 5.67, P = .045). Dose intensification recaptured clinical response in 62.5% (5/8) of patients. No new safety signals were identified.

Conclusion: This first Middle Eastern real-world study confirms risankizumab is effective and safe for complex CD and supports its use across different treatment lines.

中东地区的克罗恩病(CD)通常具有侵袭性,但该地区的患者在新疗法的关键试验中代表性不足。该研究首次在阿联酋中重度CD患者中对利尚珠单抗的有效性、安全性和剂量优化进行了实际评估。方法:该前瞻性队列包括60名阿联酋中重度CD患者,他们开始使用利尚珠单抗。终点包括临床缓解(CDAI)结果:中位年龄为33岁,61.7%接受了晚期治疗(AT)。诱导后,46.7%的患者达到临床缓解,AT-naïve患者的临床缓解率明显高于at暴露患者(69.6% vs 32.4%, P = 0.011)。总体生化缓解率为53.3%,再次有利于AT-naïve组(78.3% vs 37.8%, P = 0.005)。维持治疗时(n = 48),临床和生化缓解率分别为72.9%和70.8%。后期使用利桑单抗是诱导后缓解几率较低的重要预测因子(OR 0.27, P = 0.001)。在at暴露的患者中,先前的ustekinumab暴露与较低的缓解率相关(OR 0.11, P =。021),剂量强化的可能性更高(OR 5.67, P = 0.045)。62.5%(5/8)的患者通过剂量强化恢复了临床反应。没有发现新的安全信号。结论:这项首次中东现实世界的研究证实,利桑单抗对复杂的CD是有效和安全的,并支持其在不同治疗线的使用。
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引用次数: 0
A Short Dietary Screener Captures Food Items and Dietary Patterns That Associate With Inflammation in Inflammatory Bowel Disease. 一个简短的饮食筛选捕捉与炎症性肠病炎症相关的食物项目和饮食模式。
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-11-05 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf052
Gala M Godoy-Brewer, Chunsu Jiang, Nidah S Khakoo, Alejandro Mantero, Yalda Zarnegarnia, Maria A Quintero, Luis Garces, Maria T Abreu, Amar R Deshpande, David H Kerman, Siobhan Proksell, Yasmin Mossavar-Rahmani, Oriana M Damas

Objectives: Diet is important in inflammatory bowel disease (IBD) management, but dietary assessments for clinic use are lengthy and not readily interpretable. The aim of our study was to assess the ability of a short Dietary Screener Questionnaire (DSQ) to capture food items and dietary patterns that are associated with IBD-related inflammation.

Methods: We performed a retrospective study in adult patients with IBD who completed the DSQ from January 2019 to June 2021. Biomarkers C-reactive protein (CRP) and fecal calprotectin (Fecal Cal) were captured within 60 days of DSQ completion. General estimating equations examined relationships between food items and CRP or Fecal Cal. Machine learning was performed to develop dietary patterns.

Results: A total of 1067 patients completed the DSQ, and 577 had biochemical data; 40% were Hispanic. Several food items on the DSQ were associated with inflammatory markers on repeated measures. For instance, red meat [OR: 2.57 (1.19-5.56), P = .02], pastry desserts [OR: 2.13 (1.04-4.36), P = .04], and beans [OR: 4.2 (1.23-12.51), P = .02] were associated with higher inflammation (CRP). High vegetable intake [OR: 0.44 (0.22-0.88), P = .02] and baked whole grain goods [OR: 0.15 (0.03-0.67), P = .014] were associated with lower inflammatory markers (Fecal Cal). A dietary pattern defined by the lowest fruit and vegetable intake had the highest CRP levels (P < .001).

Conclusions: The DSQ is a short dietary screener that can identify food items that associate with inflammation in IBD. Our findings suggest that the DSQ is a feasible tool for use in clinical practice to assess, guide, and track dietary recommendations in a practical way.

目的:饮食在炎症性肠病(IBD)治疗中很重要,但临床使用的饮食评估冗长且不易解释。我们研究的目的是评估一份简短的饮食筛选问卷(DSQ)的能力,以捕捉与ibd相关炎症相关的食物和饮食模式。方法:我们对2019年1月至2021年6月完成DSQ的成年IBD患者进行了回顾性研究。生物标志物c反应蛋白(CRP)和粪便钙保护蛋白(fecal Cal)在DSQ完成后60天内被捕获。一般估算方程检查了食物与CRP或粪便钙之间的关系。机器学习用于开发饮食模式。结果:共1067例患者完成DSQ, 577例患者有生化数据;40%是西班牙裔。在重复测量中,DSQ上的几种食物与炎症标志物有关。例如,红肉[OR: 2.57 (1.19-5.56), P = .02],糕点甜点[OR: 2.13 (1.04-4.36), P = .04]和豆类[OR: 4.2 (1.23-12.51), P = .02]与较高的炎症(CRP)有关。高蔬菜摄入量[OR: 0.44 (0.22-0.88), P = 0.02]和烤全谷物食品[OR: 0.15 (0.03-0.67), P = 0.014]与较低的炎症标志物(粪卡)相关。以水果和蔬菜摄入量最低为饮食模式的人CRP水平最高(P < 0.001)。结论:DSQ是一个简短的饮食筛选器,可以识别与IBD炎症相关的食物。我们的研究结果表明,DSQ是一种可行的工具,可用于临床实践,以实用的方式评估、指导和跟踪饮食建议。
{"title":"A Short Dietary Screener Captures Food Items and Dietary Patterns That Associate With Inflammation in Inflammatory Bowel Disease.","authors":"Gala M Godoy-Brewer, Chunsu Jiang, Nidah S Khakoo, Alejandro Mantero, Yalda Zarnegarnia, Maria A Quintero, Luis Garces, Maria T Abreu, Amar R Deshpande, David H Kerman, Siobhan Proksell, Yasmin Mossavar-Rahmani, Oriana M Damas","doi":"10.1093/crocol/otaf052","DOIUrl":"10.1093/crocol/otaf052","url":null,"abstract":"<p><strong>Objectives: </strong>Diet is important in inflammatory bowel disease (IBD) management, but dietary assessments for clinic use are lengthy and not readily interpretable. The aim of our study was to assess the ability of a short Dietary Screener Questionnaire (DSQ) to capture food items and dietary patterns that are associated with IBD-related inflammation.</p><p><strong>Methods: </strong>We performed a retrospective study in adult patients with IBD who completed the DSQ from January 2019 to June 2021. Biomarkers C-reactive protein (CRP) and fecal calprotectin (Fecal Cal) were captured within 60 days of DSQ completion. General estimating equations examined relationships between food items and CRP or Fecal Cal. Machine learning was performed to develop dietary patterns.</p><p><strong>Results: </strong>A total of 1067 patients completed the DSQ, and 577 had biochemical data; 40% were Hispanic. Several food items on the DSQ were associated with inflammatory markers on repeated measures. For instance, red meat [OR: 2.57 (1.19-5.56), <i>P</i> = .02], pastry desserts [OR: 2.13 (1.04-4.36), <i>P</i> = .04], and beans [OR: 4.2 (1.23-12.51), <i>P</i> = .02] were associated with higher inflammation (CRP). High vegetable intake [OR: 0.44 (0.22-0.88), <i>P</i> = .02] and baked whole grain goods [OR: 0.15 (0.03-0.67), <i>P</i> = .014] were associated with lower inflammatory markers (Fecal Cal). A dietary pattern defined by the lowest fruit and vegetable intake had the highest CRP levels (<i>P</i> < .001).</p><p><strong>Conclusions: </strong>The DSQ is a short dietary screener that can identify food items that associate with inflammation in IBD. Our findings suggest that the DSQ is a feasible tool for use in clinical practice to assess, guide, and track dietary recommendations in a practical way.</p>","PeriodicalId":10847,"journal":{"name":"Crohn's & Colitis 360","volume":"7 4","pages":"otaf052"},"PeriodicalIF":1.8,"publicationDate":"2025-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12623008/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145548652","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}
引用次数: 0
Self-Care in Patients With Inflammatory Bowel Disease: A Descriptive Cross-Sectional Multicenter Study. 炎症性肠病患者的自我护理:一项描述性横断面多中心研究
IF 1.8 Q3 GASTROENTEROLOGY & HEPATOLOGY Pub Date : 2025-10-24 eCollection Date: 2025-10-01 DOI: 10.1093/crocol/otaf061
Daniele Napolitano, Silvia Cilluffo, Valeria Amatucci, Davide Bartoli, Valentina Biagioli, Piergiorgio Martella, Alessandro Monaci, Antonello Cocchieri, Ercole Vellone

Introudction: Inflammatory bowel disease (IBD), encompassing Crohn's disease (CD) and ulcerative colitis (UC), requires complex self-care behaviors to manage symptoms and maintain quality of life. Despite its importance, self-care in IBD remains poorly understood. This study aims to investigate self-care practices and the sociodemographic and clinical determinants of self-care among patients with IBD.

Methods: A multicenter cross-sectional study was conducted in nine IBD units in Italy. Patients were enrolled between April and June 2024. Self-care was assessed using the Self-Care of Chronic Illness Inventory, covering self-care maintenance, self-care monitoring, and self-care management. Socio-demographic and clinical data were collected through structured questionnaires. Multiple linear regressions examined the relationships between patient characteristics and self-care dimensions. The N-ECCO Research Grant supported the study.

Results: Among 452 patients (49.3% CD, 50.7% UC), mean self-care scores were 72.84 ± 12.57 (self-care maintenance), 81.14 ± 17.94 (self-care monitoring), and 67.73 ± 16.99 (self-care management). Ulcerative colitis patients demonstrated significantly better self-care management than CD patients (P = .002). Higher disease activity was associated with worse self-care maintenance (β = -.11, P = .030), while supplement use predicted better self-care maintenance (β = .10, P = .028). For self-care monitoring, female gender (β = .11, P = .020) and supplement use (β = .13, P = .005) were positively associated with higher scores.

Conclusion: Inflammatory bowel disease patients demonstrated adequate self-care maintenance and monitoring, but their self-care management was suboptimal. Female gender and supplement use were associated with better self-care monitoring; disease activity worsened self-care maintenance. Ulcerative colitis patients had better self-care management than CD, highlighting the need for tailored interventions to improve self-care.

简介:炎症性肠病(IBD),包括克罗恩病(CD)和溃疡性结肠炎(UC),需要复杂的自我保健行为来控制症状和维持生活质量。尽管自我保健很重要,但人们对IBD患者的自我保健了解甚少。本研究旨在调查IBD患者的自我保健实践和社会人口学和临床决定因素。方法:在意大利的9个IBD单位进行了一项多中心横断面研究。患者在2024年4月至6月期间入组。自我护理采用慢性疾病自我护理量表进行评估,包括自我护理维持、自我护理监测和自我护理管理。通过结构化问卷收集社会人口统计和临床数据。多元线性回归检验了患者特征与自我保健维度之间的关系。N-ECCO研究基金支持这项研究。结果:452例患者(CD 49.3%, UC 50.7%)的平均自我护理评分分别为72.84±12.57分(自我护理维持)、81.14±17.94分(自我护理监测)和67.73±16.99分(自我护理管理)。溃疡性结肠炎患者的自我保健管理明显优于乳糜泻患者(P = 0.002)。较高的疾病活动性与较差的自我护理维持相关(β = - 0.11, P =。030),而服用补充剂预示着更好的自我护理维持(β =。10, p = .028)。在自我保健监测方面,女性(β =。11、p =。020)和补充剂使用(β =。13、p =。005)与更高的分数呈正相关。结论:炎症性肠病患者表现出充分的自我保健维护和监测,但其自我保健管理不够理想。女性性别和补充剂的使用与更好的自我保健监测有关;疾病活动恶化了自我护理的维持。溃疡性结肠炎患者比乳糜泻患者有更好的自我保健管理,强调需要量身定制的干预措施来改善自我保健。
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引用次数: 0
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Crohn's & Colitis 360
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