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P028 炎症性肠病经历的沟通需求与特征(CONFIDE)调查:患者及医疗保健专业人员对溃疡性结肠炎症状体验的看法

P028 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Patient and Healthcare Professional Perspectives on Experience of Ulcerative Colitis Symptoms.

作者信息

Rubin David, Panaccione Remo, Potts Bleakman Alison, Kayhan Cem, Atkinson Christian, Hunter Gibble Theresa, Ellis Hilary, Healey Kristine, Shan Mingyang, Hibi Toshifumi

机构信息

University of Chicago Medicine Inflammatory Bowel Disease Center, Chicago, Illinois, United States.

Inflammatory Bowel Disease Clinic, Gastrointestinal Research, Cumming School of Medicine, University of Calgary, Calgary, Canada.

出版信息

Am J Gastroenterol. 2021 Dec 1;116(Suppl 1):S7. doi: 10.14309/01.ajg.0000798712.28363.8b.

Abstract

BACKGROUND

Moderate-to-severe ulcerative colitis (UC) and Crohn's disease (CD) are associated with substantial quality of life and economic burdens (Kawalec, 2016). The Communicating Needs and Features of IBD Experiences (CONFIDE) study aims to further the understanding of the experience and impact of symptoms on patients' lives and elucidate any gaps in communication between healthcare professionals (HCPs) and patients with moderate-to-severe UC and CD in the United States (US), Europe, and Japan. These data focus on US patients with UC and US HCPs.

METHODS

An online, quantitative, cross-sectional survey was conducted with HCPs (n=200) and patients with moderate-to-severe UC (n=200) in the US between May (HCPs) and July (patients) 2021. Moderate-to-severe UC was defined using criteria based on previous treatment experience, steroid use and/or hospitalization. The HCP survey included physicians (89%) and non-physician HCPs (11%) who are responsible for making prescribing decisions. Data collected included perspectives on the experience and impact of symptoms in patients with moderate-to-severe UC.

RESULTS

The top three symptoms currently (past month) and ever suffered by patients (mean age: 40.4, 61.5% male) were diarrhea (62.5% and 74.0%, respectively), bowel urgency (47.0% and 61.5%) and increased stool frequency (38.5% and 57.5%). Blood in stool was reported by 27.0% of patients as currently suffering, and 51.0% ever. According to HCPs (78.0% male), the top three symptoms reported by patients were diarrhea (73.5% ranked in top 3), blood in stool (69.0%), and increased stool frequency (37.5%). Bowel urgency was recorded in the top 3 patient-reported symptoms by 24.0% of HCPs. Patients self-rated their disease-severity as 10.5% (n = 21) mild UC, 71.0% (n = 142) moderate UC, 17.5% (n = 35) severe UC, and 1.0% (n = 2) patients did not know. Bowel urgency was more frequently reported in patients with severe disease (62.9%, n = 22) when compared with those with mild-to-moderate disease (42.9%, n = 70). Among the overall patient population, 76.5% (n = 153) were receiving advanced therapies (biologic or novel oral therapy). Bowel urgency was currently experienced by 46.4% of these patients. Only 38.2% of patients felt completely comfortable reporting bowel urgency to their HCP. Of patients not comfortable reporting bowel urgency, 62.2% (n = 23) reported they felt embarrassed talking about it. Among HCPs, 75.5% (n = 151) reported they proactively discussed bowel urgency at routine appointments. Those HCPs who reported that they do not proactively discuss bowel urgency (24.5%, n = 49) cited the main reason as they expect the patient to bring it up (46.9%, n = 23).

CONCLUSION

Bowel urgency is the second-most commonly reported symptom by patients with moderate-to-severe UC but is not among the HCP-perceived top three most reported symptoms. A substantial proportion of patients with moderate-to-severe UC receiving advanced therapies continue to report bowel urgency. A communication gap between patients and HCPs was identified and highlights the under appreciation of bowel urgency as an important symptom impacting patients' daily life.

摘要

背景

中重度溃疡性结肠炎(UC)和克罗恩病(CD)会给患者的生活质量带来严重影响,并造成经济负担(卡瓦莱克,2016年)。炎症性肠病经历的沟通需求与特征(CONFIDE)研究旨在进一步了解症状对患者生活的影响,并阐明美国、欧洲和日本的医护人员(HCP)与中重度UC和CD患者之间沟通存在的差距。这些数据聚焦于美国的UC患者和美国的医护人员。

方法

2021年5月(医护人员)至7月(患者)期间,对美国的200名医护人员和200名中重度UC患者进行了一项在线定量横断面调查。中重度UC根据既往治疗经验、类固醇使用情况和/或住院情况进行定义。医护人员调查对象包括负责开药决策的医生(89%)和非医生医护人员(11%)。收集的数据包括对中重度UC患者症状体验及影响的看法。

结果

患者目前(过去一个月)及既往经历的前三大症状(平均年龄:40.4岁,男性占61.5%)为腹泻(分别为62.5%和74.0%)、便急(47.0%和61.5%)及排便次数增加(38.5%和57.5%)。27.0%的患者称目前有便血症状,51.0%的患者称既往有过。据医护人员(男性占78.0%)报告,患者提及的前三大症状为腹泻(73.5%排在前三位)、便血(69.0%)及排便次数增加(37.5%)。24.0%的医护人员将便急列为患者报告的前三大症状之一。患者将自身疾病严重程度自评如下:轻度UC占10.5%(n = 21),中度UC占71.0%(n = 142),重度UC占17.5%(n = 35),1.0%(n = 2)的患者表示不清楚。与轻至中度疾病患者(42.9%,n = 70)相比,重度疾病患者(62.9%,n = 22)更常报告便急症状。在全部患者群体中,76.5%(n = 153)正在接受先进疗法(生物制剂或新型口服疗法)。这些患者中,46.4%目前有便急症状。只有38.2%的患者在向医护人员报告便急症状时感到完全自在。在那些对报告便急症状感到不自在的患者中,62.2%(n = 23)表示他们觉得谈论此事很尴尬。在医护人员中,75.5%(n = 151)报告称他们在常规诊疗时会主动讨论便急问题。那些报告不会主动讨论便急问题的医护人员(24.5%,n = 49)给出的主要原因是他们期望患者主动提及(46.9%,n = 23)。

结论

便急是中重度UC患者报告的第二常见症状,但并非医护人员认为患者报告最多的三大症状之一。相当一部分接受先进疗法的中重度UC患者仍报告有便急症状。已发现患者与医护人员之间存在沟通差距,这凸显了便急作为影响患者日常生活的重要症状未得到充分重视。

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