患者和医护人员对美国和欧洲中重度克罗恩病症状的体验和影响的认知:来自横断面 CONFIDE 研究的结果。

Patient and Health Care Professional Perceptions of the Experience and Impact of Symptoms of Moderate-to-Severe Crohn's Disease in US and Europe: Results from the Cross-Sectional CONFIDE Study.

机构信息

University Hospital Schleswig-Holstein, Keil University, Kiel, Germany.

Eli Lilly and Company, Indianapolis, USA.

出版信息

Dig Dis Sci. 2024 Jul;69(7):2333-2344. doi: 10.1007/s10620-024-08434-5. Epub 2024 May 3.

Abstract

BACKGROUND

Crohn's disease (CD) significantly affects patients' health-related quality of life and well-being.

AIMS

Communicating Needs and Features of IBD Experiences (CONFIDE) survey explores the experience and impact of moderate-to-severe CD symptoms on patients' lives and identifies communication gaps between patients and health care professionals (HCPs).

METHODS

Online, quantitative, cross-sectional surveys of patients, and HCPs were conducted in the United States (US), Europe (France, Germany, Italy, Spain, United Kingdom), and Japan. Criteria based on previous treatment, steroid use, and/or hospitalization defined moderate-to-severe CD. US and Europe data are presented as descriptive statistics.

RESULTS

Surveys were completed by 215 US and 547 European patients and 200 US and 503 European HCPs. In both patient groups, top three symptoms currently (past month) experienced were diarrhea, bowel urgency, and increased stool frequency, with more than one-third patients wearing diaper/pad/protection at least once a week in past 3 months due to fear of bowel urgency-related accidents. HCPs ranked diarrhea, blood in stool, and increased stool frequency as the most common symptoms. Although 34.0% US and 27.2% European HCPs ranked bowel urgency among the top five symptoms affecting patient lives, only 12.0% US and 10.9% European HCPs ranked it among top three most impactful symptoms on treatment decisions.

CONCLUSION

Bowel urgency is common and impactful among patients with CD in the US and Europe. Differences in patient and HCP perceptions of experiences and impacts of bowel urgency exist, with HCPs underestimating its burden. Proactive communication between HCPs and patients in clinical settings is crucial for improving health outcomes in patients with CD.

摘要

背景

克罗恩病(CD)显著影响患者的健康相关生活质量和幸福感。

目的

沟通炎症性肠病(IBD)体验的需求和特征(CONFIDE)调查研究了中重度 CD 症状对患者生活的影响及其体验,并确定了患者和医疗保健专业人员(HCP)之间的沟通差距。

方法

在美国(美国)、欧洲(法国、德国、意大利、西班牙、英国)和日本,对患者和 HCP 进行了在线、定量、横断面调查。基于先前的治疗、类固醇使用和/或住院治疗的标准定义了中重度 CD。美国和欧洲的数据以描述性统计数据呈现。

结果

215 名美国和 547 名欧洲患者以及 200 名美国和 503 名欧洲 HCP 完成了调查。在两组患者中,目前(过去一个月)经历的前三种症状是腹泻、排便急迫和粪便频率增加,超过三分之一的患者因害怕与排便急迫相关的意外而在过去 3 个月中每周至少使用一次尿布/垫/保护装置。HCP 将腹泻、粪便中有血和粪便频率增加列为最常见的症状。尽管 34.0%的美国和 27.2%的欧洲 HCP 将排便急迫列为影响患者生活的前五名症状之一,但只有 12.0%的美国和 10.9%的欧洲 HCP 将其列为对治疗决策影响最大的前三种症状之一。

结论

排便急迫在美欧 CD 患者中很常见且影响较大。患者和 HCP 对体验和排便急迫影响的看法存在差异,HCP 低估了其负担。HCP 和患者在临床环境中进行积极主动的沟通对于改善 CD 患者的健康结果至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b7c6/11258049/173dc5a02bc9/10620_2024_8434_Fig1_HTML.jpg

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