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溃疡性结肠炎:疾病负担、对日常生活的影响以及不愿咨询医疗专业人员:一项日本互联网调查的结果

Ulcerative Colitis: Disease Burden, Impact on Daily Life, and Reluctance to Consult Medical Professionals: Results from a Japanese Internet Survey.

作者信息

Hibi Toshifumi, Ishibashi Toyomi, Ikenoue Yuka, Yoshihara Ryoichi, Nihei Akiko, Kobayashi Taku

机构信息

Center for Advanced IBD Research and Treatment, Kitasato University, Kitasato Institute Hospital, Tokyo, Japan.

Medical Science Group, Department of Medical, EA Pharma Co., Ltd., Tokyo, Japan.

出版信息

Inflamm Intest Dis. 2020 Feb;5(1):27-35. doi: 10.1159/000505092. Epub 2020 Feb 3.

DOI:10.1159/000505092
PMID:32232052
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7098303/
Abstract

BACKGROUND AND AIM

The prevalence of ulcerative colitis has increased in Asian populations in recent years. This Japanese internet survey investigated the symptoms, impact, and treatment of ulcerative colitis, and communication between patients and medical professionals.

METHODS

This was a non-interventional analysis of responses from participants with ulcerative colitis who had regularly visited medical providers for their disease in the past year.

RESULTS

In 501 evaluable participants, the mean age was 39.8 years and mean disease duration was 7.6 years. Ulcerative colitis had a "significant impact" on daily life in 43.5% of participants who experienced bowel urgency and 48.6% who experienced bowel incontinence. Although the prevalence of bowel urgency and bowel incontinence was associated with higher stool frequency and rectal bleeding scores ( value for trend <0.0001), they still existed even in patients without frequent stools or rectal bleeding. Around 30% of participants hesitated to discuss symptoms such as bowel incontinence with a medical professional. Approximately three-quarters preferred to use websites for medical information. Most participants (78.0%) had used topical treatments. However, 25.7% were hesitant to use such treatments due to concerns about discomfort (48.1%) and administration difficulty (47.3%).

CONCLUSIONS

Ulcerative colitis significantly affects daily life, largely due to symptoms such as bowel urgency and bowel incontinence. Despite desiring to improve bowel incontinence, patients are embarrassed to consult physicians or nurses. Therefore, medical professionals should make an active effort to draw out patients' individual concerns, including symptoms that patients may not initially feel able to talk about openly.

摘要

背景与目的

近年来,溃疡性结肠炎在亚洲人群中的患病率有所上升。这项日本的网络调查研究了溃疡性结肠炎的症状、影响、治疗以及患者与医疗专业人员之间的沟通情况。

方法

这是一项对过去一年中因溃疡性结肠炎定期就医的参与者的回复进行的非干预性分析。

结果

在501名可评估的参与者中,平均年龄为39.8岁,平均病程为7.6年。在经历便急的参与者中,43.5%认为溃疡性结肠炎对日常生活有“重大影响”;在经历大便失禁的参与者中,这一比例为48.6%。尽管便急和大便失禁的患病率与更高的排便频率和直肠出血评分相关(趋势值<0.0001),但即使在没有频繁排便或直肠出血的患者中,这些症状仍然存在。约30%的参与者在与医疗专业人员讨论诸如大便失禁等症状时会犹豫。大约四分之三的参与者更喜欢通过网站获取医疗信息。大多数参与者(78.0%)使用过局部治疗。然而,25.7%的参与者因担心不适(48.1%)和给药困难(47.3%)而对使用此类治疗犹豫不决。

结论

溃疡性结肠炎对日常生活有显著影响,主要是由于便急和大便失禁等症状。尽管患者希望改善大便失禁的情况,但他们不好意思咨询医生或护士。因此,医疗专业人员应积极努力了解患者的个人担忧,包括那些患者最初可能觉得无法公开谈论的症状。

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