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从患者角度看溃疡性结肠炎:两项互联网调查综述

Ulcerative colitis from patients' viewpoint: a review of two Internet surveys.

作者信息

Dudley-Brown Sharon, Baker Kathy

机构信息

School of Medicine, Johns Hopkins University, Baltimore, MD 21287, USA.

出版信息

Gastroenterol Nurs. 2012 Jan-Feb;35(1):54-63. doi: 10.1097/SGA.0b013e318241d981.

Abstract

Ulcerative colitis negatively impacts patients' quality of life, but little is known about which aspects of patients' lives are affected, how patients' perceptions compare with patients with other chronic conditions, and how these perceptions compare with those of gastroenterologists. This review discusses two recent Internet surveys: (1) the Ulcerative Colitis: New Observations on Remission Management And Lifestyle (UC:NORMAL) and (2) the Crohn's and Colitis Foundation of America studies. The surveys revealed that the major impact ulcerative colitis has on patients includes frequent disease manifestations, a substantial psychological burden, and disruption to daily activities. This was more evident in patients with ulcerative colitis than those with migraine, asthma, or rheumatoid arthritis. Physicians' perceptions were considerably different from those of patients, as physicians believed that the disease had a lesser impact on patient quality of life. Furthermore, patients and physicians also identified nonadherence to prescribed medication as a major concern in the treatment of ulcerative colitis. Improved communication and education is needed to address nonadherence and poor health related quality of life in patients living with ulcerative colitis. The influence of Advanced Practice Registered Nurses on physicians, nurses, and patients may help improve adherence and long-term disease outcomes, including patients' health related quality of life. The nurse practitioner, working with both patients who have ulcerative colitis and the physicians who care for these patients, is uniquely placed to address these needs.

摘要

溃疡性结肠炎会对患者的生活质量产生负面影响,但对于患者生活的哪些方面受到影响、患者的认知与其他慢性病患者的认知相比如何,以及这些认知与胃肠病学家的认知相比如何,我们知之甚少。本综述讨论了两项近期的互联网调查:(1)溃疡性结肠炎:缓解管理与生活方式新观察(UC:NORMAL)和(2)美国克罗恩病和结肠炎基金会的研究。调查显示,溃疡性结肠炎对患者的主要影响包括频繁的疾病表现、沉重的心理负担以及日常活动的中断。这在溃疡性结肠炎患者中比在偏头痛、哮喘或类风湿性关节炎患者中更为明显。医生的认知与患者的认知有很大不同,因为医生认为该疾病对患者生活质量的影响较小。此外,患者和医生还将不遵医嘱服药视为溃疡性结肠炎治疗中的一个主要问题。需要改善沟通和教育,以解决溃疡性结肠炎患者的不遵医嘱问题和与健康相关的生活质量差的问题。高级执业注册护士对医生、护士和患者的影响可能有助于提高依从性和改善长期疾病结局,包括患者与健康相关的生活质量。执业护士与患有溃疡性结肠炎的患者以及照顾这些患者的医生一起工作,处于独特的位置来满足这些需求。

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