Sydney Medical School, University of Sydney, Sydney, Australia.
Dis Colon Rectum. 2011 May;54(5):579-85. doi: 10.1007/DCR.0b013e3182099d9e.
Perianal Crohn's disease can affect quality of life across physical, functional, and psychosocial domains. Little is known about how patients prioritize factors affecting their quality of life.
This study aimed to determine which factors are considered by patients to be the most important and most unfavorable to their quality of life, and to gauge the relative impact of perianal and nonperianal symptoms.
This cross-sectional study involves a mailed questionnaire and medical records audit.
Recruitment was from the database of 2 specialists at a single tertiary-level teaching hospital. Surveys were completed in the community.
Patients with Crohn's disease who had been seen in the preceding 10 years with documented perianal disease were recruited to participate. Of 130 patients invited, 69 (53%) returned a survey.
Patients rated the importance of 16 quality-of-life factors spanning multiple domains. Patient utility was also elicited through use of trade-off scenarios.
The mean age of participants was 42.7 years and 62% were female. Eighty percent of patients had undergone prior surgery. Anal pain or discomfort was considered the most important factor for patients, rated highly important by 40%. Physical symptoms were rated more important and adverse than functional, psychosocial, and body image factors. The presence of a long-term perianal drain was predictive of high ratings of importance for the majority of factors investigated. Perianal symptoms did not contribute more than nonperianal symptoms to overall utility.
This study was limited by its small sample size, single-institution bias, self-completion questionnaire, and response rate.
Patients with perianal Crohn's disease experience significant impairment of quality of life. Physical symptoms are felt to be the most important and unfavorable. The patient experience of long-term perianal drains warrants further study.
肛周克罗恩病会影响患者的生理、功能和心理社会等多个方面的生活质量。目前尚不清楚患者如何优先考虑影响其生活质量的因素。
本研究旨在确定患者认为哪些因素对其生活质量最重要和最不利，并评估肛周和非肛周症状的相对影响。
这是一项横断面研究，涉及邮寄问卷和病历审核。
招募来自一家三级教学医院的 2 位专家的数据库。调查在社区完成。
招募了过去 10 年内曾就诊且有记录的肛周疾病的克罗恩病患者参与。在邀请的 130 名患者中，有 69 名（53%）返回了调查问卷。
患者对跨越多个领域的 16 个生活质量因素的重要性进行了评分。还通过使用权衡方案来评估患者的效用。
参与者的平均年龄为 42.7 岁，62%为女性。80%的患者曾接受过手术。肛门疼痛或不适被认为是对患者最重要的因素，40%的患者认为其非常重要。生理症状比功能、心理社会和身体形象因素更重要和不利。长期存在肛周引流管与大多数研究因素的高重要性评分相关。与非肛周症状相比，肛周症状对总体效用的贡献并不多。
本研究受到样本量小、单机构偏见、自我完成问卷和应答率的限制。
患有肛周克罗恩病的患者生活质量受到显著损害。生理症状被认为是最重要和最不利的。需要进一步研究患者对长期肛周引流管的体验。
