溃疡性结肠炎患者更关注疾病并发症而非药物副作用。

Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications.

作者信息

Thompson Kimberly D, Connor Susan J, Walls Danielle M, Gollins Jan, Stewart Sabrina K, Bewtra Meena, Baumblatt Geri L, Holubar Stefan D, Greenup Astrid-Jane, Sechi Alexandra, Girgis Afaf, Rubin David T, Siegel Corey A

机构信息

*Dartmouth-Hitchcock Inflammatory Bowel Disease Center, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire; †Department of Medicine, Geisel School of Medicine, Hanover, New Hampshire; ‡Department of Gastroenterology, Liverpool Hospital and University of New South Wales, Sydney, Australia; §Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Sydney, Australia; ‖BDJ Solutions, Melrose, Massachusetts; ¶Delta Modelling, Mount Prospect, Illinois; **Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; ††Emmi Solutions, Chicago, Illinois; and ‡‡The University of Chicago Medicine's Inflammatory Bowel Disease Center, The University of Chicago Medicine, Chicago, Illinois.

出版信息

Inflamm Bowel Dis. 2016 Apr;22(4):940-7. doi: 10.1097/MIB.0000000000000740.

DOI:10.1097/MIB.0000000000000740

PMID:26950308

Abstract

BACKGROUND

Patients with ulcerative colitis (UC) are often fearful about medication side effects and how the disease will affect their future. Our aim was to better understand what aspects of UC, and UC management, are most concerning to patients, and how they would like to be informed about treatment options.

METHODS

A Web-based survey was sent to UC patients throughout the United States and Australia. In addition to standard closed-response questions, audio clips were embedded in the survey and respondents showed their strength of agreement or disagreement using moment-to-moment affect-trace methodology. Standard quantitative analysis was used for the survey results, and cluster analysis was performed on the affect-trace responses.

RESULTS

A total of 460 patients with UC (370 patients from the United States and 90 patients from Australia) responded to the survey. Of them, 53% of the respondents were women, with a mean age of 49 (range 19-81) years. Most patients (87%) wanted to share treatment decision making with their doctors. The majority, 98%, wanted more than just a basic understanding of their disease. Patients were most concerned about the risk of colorectal cancer (37%), and the possible need for an ileostomy (29%). Only 14% of patients indicated that side effects from medications were their biggest concern. On affect-trace analysis, the most divergence in opinion centered on the appropriate timing for colectomy.

CONCLUSIONS

To facilitate informed treatment decisions for UC patients, in addition to reviewing the benefits and risks of medications, it is also important to discuss the best strategies for decreasing the risk of colectomy and colorectal cancer.

摘要

背景

溃疡性结肠炎（UC）患者常常担心药物副作用以及疾病对其未来的影响。我们的目的是更好地了解UC及其管理的哪些方面最令患者担忧，以及他们希望如何了解治疗选择。

方法

向美国和澳大利亚的UC患者发送了一项基于网络的调查。除了标准的封闭式回答问题外，调查中还嵌入了音频片段，受访者使用即时情感追踪方法表明他们同意或不同意的程度。对调查结果进行标准的定量分析，并对情感追踪回答进行聚类分析。

结果

共有460例UC患者（370例来自美国，90例来自澳大利亚）回复了调查。其中，53%的受访者为女性，平均年龄49岁（范围19 - 81岁）。大多数患者（87%）希望与医生共同做出治疗决策。绝大多数（98%）患者希望对自己的疾病有深入了解，而非仅仅是基本认识。患者最担心的是结直肠癌风险（37%）以及可能需要进行回肠造口术（29%）。只有14%的患者表示药物副作用是他们最担心的问题。在情感追踪分析中，意见分歧最大的集中在结肠切除术的合适时机上。