• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

国际视角下炎症性肠病的管理:IBD GAPPS 调查中患者和医生的意见差异和相似性。

International Perspectives on Management of Inflammatory Bowel Disease: Opinion Differences and Similarities Between Patients and Physicians From the IBD GAPPS Survey.

机构信息

University of Chicago Medicine Inflammatory Bowel Disease Center, Chicago, Illinois, USA.

Digestive Disease Associates, Gainesville, Florida, USA.

出版信息

Inflamm Bowel Dis. 2021 Nov 15;27(12):1942-1953. doi: 10.1093/ibd/izab006.

DOI:10.1093/ibd/izab006
PMID:33512475
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8637792/
Abstract

BACKGROUND

Inflammatory bowel diseases (IBD), including Crohn disease (CD) and ulcerative colitis (UC), are complex disorders with multiple comorbidities. We conducted international patient and physician surveys to evaluate current experiences and perceptions of patients with CD or UC and physicians who treat IBD.

METHODS

The IBD Global Assessment of Patient and Physician Unmet Need Surveys comprised a patient survey and a physician survey, fielded in North America and Europe between August 16, 2019, and November 10, 2019. Adults with CD or UC (targeted 1:1 ratio) were recruited from physicians, patient advocacy groups, and recruitment panels; physicians were recruited by recruitment agencies and panels.

RESULTS

In total, 2398 patients with IBD (1368 CD, 1030 UC) and 654 physicians completed surveys. Anxiety and depression were the most common comorbidities among patients with IBD. Patients and physicians were generally aligned on treatment goals and patient-physician communication. Patients with IBD reported high quality-of-life impact by rectal urgency and need to use the toilet, which were rated as lower-impact by physicians. Patients defined remission based on symptoms; physicians defined remission based primarily on clinical tests. Patients expected current treatments to control their disease for a longer duration than did physicians. Patients expressed more concern about corticosteroid use compared with physicians; many physicians reported prescribing corticosteroids for more than 4 months per year in some patients.

CONCLUSIONS

Patients could benefit from education about disease remission and expectations for current therapies. High corticosteroid use is concerning to patients, and physicians should minimize the use of corticosteroids for extended periods of time.

摘要

背景

炎症性肠病(IBD)包括克罗恩病(CD)和溃疡性结肠炎(UC),是一种具有多种合并症的复杂疾病。我们进行了国际患者和医生调查,以评估 CD 或 UC 患者和治疗 IBD 的医生的当前经验和认知。

方法

IBD 患者和医生未满足需求全球评估调查包括患者调查和医生调查,于 2019 年 8 月 16 日至 11 月 10 日在北美和欧洲进行。从医生、患者权益组织和招募小组招募 CD 或 UC 患者(目标 1:1 比例);通过招募机构和小组招募医生。

结果

共有 2398 名 IBD 患者(1368 名 CD,1030 名 UC)和 654 名医生完成了调查。焦虑和抑郁是 IBD 患者最常见的合并症。患者和医生在治疗目标和医患沟通方面基本一致。IBD 患者报告直肠急迫和需要上厕所对生活质量的影响较大,而医生则认为这些影响较小。患者根据症状定义缓解期;医生主要根据临床检查来定义缓解期。患者期望当前的治疗能使他们的病情得到更长时间的控制,而医生则不然。患者比医生更担心皮质类固醇的使用;许多医生报告说,在某些患者中,每年有超过 4 个月的时间都在使用皮质类固醇。

结论

患者可能需要接受关于疾病缓解和对当前治疗方法的期望的教育。皮质类固醇的大量使用令患者感到担忧,医生应尽量减少长期使用皮质类固醇。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/27a58a40df7b/izab006f0004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/37f18e71a7ce/izab006f0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/8182d96fcf4f/izab006f0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/861ba84491ac/izab006f0003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/27a58a40df7b/izab006f0004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/37f18e71a7ce/izab006f0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/8182d96fcf4f/izab006f0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/861ba84491ac/izab006f0003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efa4/8637792/27a58a40df7b/izab006f0004.jpg

相似文献

1
International Perspectives on Management of Inflammatory Bowel Disease: Opinion Differences and Similarities Between Patients and Physicians From the IBD GAPPS Survey.国际视角下炎症性肠病的管理:IBD GAPPS 调查中患者和医生的意见差异和相似性。
Inflamm Bowel Dis. 2021 Nov 15;27(12):1942-1953. doi: 10.1093/ibd/izab006.
2
Corticosteroid Sparing in Inflammatory Bowel Disease is More Often Achieved in the Immunomodulator and Biological Era-Results from the Dutch Population-Based IBDSL Cohort.在免疫调节剂和生物制剂时代,炎症性肠病患者更常实现皮质类固醇的节省-来自荷兰基于人群的 IBDSL 队列的结果。
Am J Gastroenterol. 2018 Mar;113(3):384-395. doi: 10.1038/ajg.2017.482. Epub 2018 Jan 9.
3
Crohn's disease and ulcerative colitis. Occurrence, course and prognosis during the first year of disease in a European population-based inception cohort.克罗恩病和溃疡性结肠炎。欧洲一项基于人群的起始队列研究中疾病第一年的发病率、病程及预后
Dan Med J. 2014 Jan;61(1):B4778.
4
Bowel Urgency in Patients with Ulcerative Colitis and Crohn's Disease: A Cross-Sectional Real-World Survey in Japan.溃疡性结肠炎和克罗恩病患者的肠道紧迫感:日本的一项横断面真实世界调查。
Adv Ther. 2024 Jan;41(1):431-450. doi: 10.1007/s12325-023-02726-4. Epub 2023 Nov 24.
5
Clinical status, psychosocial impairments, medical treatment and health care costs for patients with inflammatory bowel disease (IBD) in Germany: an online IBD registry.德国炎症性肠病(IBD)患者的临床状况、心理社会障碍、治疗方法和医疗保健费用:一项在线 IBD 登记研究。
J Crohns Colitis. 2013 Jun;7(5):355-68. doi: 10.1016/j.crohns.2012.02.014. Epub 2012 Apr 12.
6
Differences in Outcomes Reported by Patients With Inflammatory Bowel Diseases vs Their Health Care Professionals.炎症性肠病患者与医疗保健专业人员报告的结局差异。
Clin Gastroenterol Hepatol. 2019 Sep;17(10):2050-2059.e1. doi: 10.1016/j.cgh.2018.11.029. Epub 2018 Nov 22.
7
Change in systemic steroid use and surgery rate in patients with inflammatory bowel disease: a Japanese real-world database analysis.炎症性肠病患者全身类固醇使用和手术率的变化:日本真实世界数据库分析。
J Gastroenterol. 2024 May;59(5):389-401. doi: 10.1007/s00535-024-02086-y. Epub 2024 Mar 16.
8
Differentiating ulcerative colitis from Crohn disease in children and young adults: report of a working group of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the Crohn's and Colitis Foundation of America.儿童及青年溃疡性结肠炎与克罗恩病的鉴别:北美儿科胃肠病学、肝病学和营养学会及美国克罗恩病和结肠炎基金会工作组报告
J Pediatr Gastroenterol Nutr. 2007 May;44(5):653-74. doi: 10.1097/MPG.0b013e31805563f3.
9
CD4+ immune response as a potential biomarker of patient reported inflammatory bowel disease (IBD) activity.CD4+ 免疫反应作为患者报告的炎症性肠病 (IBD) 活动的潜在生物标志物。
Clin Chim Acta. 2013 Jun 5;421:31-3. doi: 10.1016/j.cca.2013.02.016. Epub 2013 Feb 26.
10
The Continental Divide: Anti-TNF Use in Pediatric IBD Is Different in North America Compared to Other Parts of the World.大陆分水岭:与世界其他地区相比,TNF 拮抗剂在北美的儿科 IBD 中的应用有所不同。
Can J Gastroenterol Hepatol. 2018 Jun 12;2018:3190548. doi: 10.1155/2018/3190548. eCollection 2018.

引用本文的文献

1
Broad Impact of Bowel Urgency in Ulcerative Colitis and Crohn's Disease: US, European, and Japanese Patient and Healthcare Professional Perspectives from the Communicating Needs and Features of IBD Experiences (CONFIDE) Survey.溃疡性结肠炎和克罗恩病中肠道急迫感的广泛影响:来自“炎症性肠病经历的沟通需求与特征”(CONFIDE)调查的美国、欧洲和日本患者及医疗保健专业人员观点
Adv Ther. 2025 Jul 11. doi: 10.1007/s12325-025-03296-3.
2
Impact of mirikizumab treatment on fatigue in patients with moderately to severely active Crohn's disease: results from the phase 3 VIVID-1 study.mirikizumab治疗对中度至重度活动性克罗恩病患者疲劳的影响:3期VIVID-1研究结果
J Crohns Colitis. 2025 Jul 3;19(7). doi: 10.1093/ecco-jcc/jjaf100.
3

本文引用的文献

1
Are we choosing wisely for inflammatory bowel disease care? The IG-IBD choosing wisely campaign.我们是否为炎症性肠病的护理做出了明智的选择?IG-IBD 明智选择活动。
Dig Liver Dis. 2020 Jan;52(1):44-50. doi: 10.1016/j.dld.2019.09.019. Epub 2019 Oct 21.
2
Ustekinumab as Induction and Maintenance Therapy for Ulcerative Colitis.乌司奴单抗诱导和维持溃疡性结肠炎的治疗。
N Engl J Med. 2019 Sep 26;381(13):1201-1214. doi: 10.1056/NEJMoa1900750.
3
Tofacitinib in the treatment of ulcerative colitis: efficacy and safety from clinical trials to real-world experience.
US and European Patient and Health Care Professional Perspectives on Fatigue in Ulcerative Colitis and Crohn's Disease: Results From the Communicating Needs and Features of Inflammatory Bowel Disease Experiences Survey.
美国和欧洲患者及医疗保健专业人员对溃疡性结肠炎和克罗恩病疲劳的看法:炎症性肠病经历沟通需求与特征调查结果
Crohns Colitis 360. 2025 Mar 18;7(2):otaf011. doi: 10.1093/crocol/otaf011. eCollection 2025 Apr.
4
The emerging role of honeysuckle flower in inflammatory bowel disease.金银花在炎症性肠病中的新作用。
Front Nutr. 2025 Mar 28;12:1525675. doi: 10.3389/fnut.2025.1525675. eCollection 2025.
5
Mirikizumab Improves Quality of Life and Work Productivity in Patients with Moderately to Severely Active Crohn's Disease: Results from the Phase 3 VIVID-1 Study.mirikizumab改善中度至重度活动性克罗恩病患者的生活质量和工作效率:3期VIVID-1研究结果
Am J Gastroenterol. 2025 Mar 13;120(8):1809-19. doi: 10.14309/ajg.0000000000003410.
6
Substantial Reduction of Systemic Corticosteroid Use After Primary Ileocaecal Resection in Swedish Patients With Crohn's Disease: A Population-Based Cohort Study.瑞典克罗恩病患者初次回盲部切除术后全身皮质类固醇使用量大幅减少:一项基于人群的队列研究
Aliment Pharmacol Ther. 2025 May;61(10):1649-1661. doi: 10.1111/apt.70069. Epub 2025 Mar 10.
7
Patient and Health Care Professional Perspectives on the Burden and Daily Life Impact of Ulcerative Colitis and Crohn's Disease: Results from the Japanese CONFIDE Study.溃疡性结肠炎和克罗恩病患者及医疗保健专业人员对疾病负担和日常生活影响的看法:日本CONFIDE研究结果
Adv Ther. 2025 Apr;42(4):1834-1859. doi: 10.1007/s12325-024-03078-3. Epub 2025 Feb 28.
8
What is first-line and what is second-line therapy in adult patients with moderate to severe Crohn's disease?对于中重度克罗恩病成年患者,一线治疗和二线治疗分别是什么?
J Can Assoc Gastroenterol. 2025 Feb 21;8(Suppl 2):S1-S5. doi: 10.1093/jcag/gwae053. eCollection 2025 Mar.
9
Development and Examination of an Educational Program Combining E-Learning and Face-to-Face Training That Nurtures Inflammatory Bowel Disease Nurse Specialists.结合电子学习与面对面培训以培养炎症性肠病专科护士的教育项目的开发与评估
Inflamm Intest Dis. 2024 Dec 10;10(1):1-9. doi: 10.1159/000541485. eCollection 2025 Jan-Dec.
10
Evaluation of the Symptoms and Clinical Characteristics of Crohn's Disease and Ulcerative Colitis That Affect Healthcare Providers' Treatment Choices.评估影响医疗服务提供者治疗选择的克罗恩病和溃疡性结肠炎的症状及临床特征。
Crohns Colitis 360. 2024 Oct 5;6(4):otae053. doi: 10.1093/crocol/otae053. eCollection 2024 Oct.
托法替布治疗溃疡性结肠炎:从临床试验到真实世界经验的疗效与安全性
Therap Adv Gastroenterol. 2019 May 16;12:1756284819848631. doi: 10.1177/1756284819848631. eCollection 2019.
4
Vedolizumab Induces Endoscopic and Histologic Remission in Patients With Crohn's Disease.维得利珠单抗诱导克罗恩病患者内镜和组织学缓解。
Gastroenterology. 2019 Oct;157(4):997-1006.e6. doi: 10.1053/j.gastro.2019.05.067. Epub 2019 Jun 5.
5
Induction and maintenance treatment of inflammatory bowel disease: A comprehensive review.炎症性肠病的诱导和维持治疗:全面综述。
Autoimmun Rev. 2019 May;18(5):439-454. doi: 10.1016/j.autrev.2019.03.002. Epub 2019 Mar 4.
6
ACG Clinical Guideline: Ulcerative Colitis in Adults.ACG 临床指南:成人溃疡性结肠炎。
Am J Gastroenterol. 2019 Mar;114(3):384-413. doi: 10.14309/ajg.0000000000000152.
7
Unmet Medical Needs in Ulcerative Colitis: An Expert Group Consensus.溃疡性结肠炎未满足的医疗需求:专家组共识
Dig Dis. 2019;37(4):266-283. doi: 10.1159/000496739. Epub 2019 Feb 6.
8
Healthcare Providers Underestimate Patients' Glucocorticoid Use in Crohn's Disease.医护人员低估了克罗恩病患者的糖皮质激素使用情况。
Dig Dis Sci. 2019 May;64(5):1142-1149. doi: 10.1007/s10620-018-5419-3. Epub 2019 Jan 19.
9
Physicians' Perspectives on Cost, Safety, and Perceived Efficacy Determine Aminosalicylate Use in Crohn's Disease.医生对成本、安全性和疗效的看法决定了氨基水杨酸盐在克罗恩病中的应用。
Dig Dis Sci. 2018 Oct;63(10):2555-2563. doi: 10.1007/s10620-018-5181-6. Epub 2018 Jun 29.
10
Efficacy of Ustekinumab for Inducing Endoscopic Healing in Patients With Crohn's Disease.乌司奴单抗诱导克罗恩病患者内镜下愈合的疗效。
Gastroenterology. 2018 Oct;155(4):1045-1058. doi: 10.1053/j.gastro.2018.06.035. Epub 2018 Aug 29.