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克罗恩病肛周瘘管对生活质量的影响:一项国际患者调查结果

The Impact of Crohn's Perianal Fistula on Quality of Life: Results of an International Patient Survey.

作者信息

Spinelli Antonino, Yanai Henit, Girardi Paolo, Milicevic Slobodan, Carvello Michele, Maroli Annalisa, Avedano Luisa

机构信息

Department of Biomedical Sciences, Humanitas University, Via Rita Levi Montalcini 4, 20090 Pieve Emanuele, Milan, Italy.

Division of Colon and Rectal Surgery, IRCCS Humanitas Research Hospital, Via Manzoni 56, 20089 Rozzano, Milan, Italy.

出版信息

Crohns Colitis 360. 2023 Jul 25;5(3):otad036. doi: 10.1093/crocol/otad036. eCollection 2023 Jul.

Abstract

BACKGROUND

Crohn's perianal fistula is a disabling manifestation of Crohn's disease. However, the additional burden of perianal fistula on patients with only Crohn's disease remains to be addressed. This patient-reported survey considered outcomes of two domains: "diagnosis" (eg, symptoms) and "living with the disease" (eg, quality of life, well-being, and relationships).

METHODS

Patients with perianal fistula and Crohn's disease completed an online, self-selective, anonymous, 46-item survey available in 11 languages hosted on the European Federation of Crohn's & Ulcerative Colitis Associations and national patient association websites. The survey was conducted between July and December 2019 in Europe and other regions. Likert scales and closed questions were used to assess outcomes.

RESULTS

Of the 820 respondents with Crohn's disease (67.2% women; median age, 40.0 years), 532 (64.9%) reported the presence of perianal fistula. Patients with perianal fistula reported a greater impact on overall quality of life ( < .001), well-being ( < .001), relationships ( < .001), social life ( = .001), and work life ( = .012) than patients with only Crohn's disease.

CONCLUSIONS

Perianal fistulas impact several domains of the life of patients with Crohn's disease. These results may help healthcare practitioners plan therapeutic strategies that address the symptomatic and psychological burden experienced by patients with perianal fistulizing Crohn's disease.

摘要

背景

克罗恩病肛周瘘管是克罗恩病的一种致残表现。然而,肛周瘘管给仅患有克罗恩病的患者带来的额外负担仍有待解决。这项患者报告调查考虑了两个领域的结果:“诊断”(如症状)和“与疾病共存”(如生活质量、幸福感和人际关系)。

方法

患有肛周瘘管和克罗恩病的患者完成了一项在线、自我选择、匿名的46项调查,该调查有11种语言版本,发布在欧洲克罗恩病和溃疡性结肠炎协会联合会以及各国患者协会的网站上。该调查于2019年7月至12月在欧洲和其他地区进行。采用李克特量表和封闭式问题来评估结果。

结果

在820名克罗恩病受访者中(67.2%为女性;中位年龄40.0岁),532人(64.9%)报告存在肛周瘘管。与仅患有克罗恩病的患者相比,患有肛周瘘管的患者报告其对总体生活质量(<0.001)、幸福感(<0.001)、人际关系(<0.001)、社交生活(=0.001)和工作生活(=0.012)的影响更大。

结论

肛周瘘管会影响克罗恩病患者生活的多个领域。这些结果可能有助于医疗从业者制定治疗策略,以应对肛周瘘管型克罗恩病患者所经历的症状负担和心理负担。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9196/10390083/a87100fe0215/otad036_fig1.jpg

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