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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.

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/efa4/8637792/37f18e71a7ce/izab006f0001.jpg

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