Institute of Applied Health Research,University of Birmingham, Birmingham, UK.
Academic Department of Surgery, University of Birmingham, Birmingham, UK.
BMJ Open. 2017 Aug 21;7(8):e017544. doi: 10.1136/bmjopen-2017-017544.
To provide a framework that is able to categorise whether patients are able to adapt to and lead a 'normal' life with ulcerative colitis (UC) and to detail the factors that influence this.
Qualitative research study using in-depth semi-structured interviews.
Four clinical sites in the West and East Midlands regions of England.
28 adult patients diagnosed with UC for years between 1 and 22.
Medication was rarely sufficient for patients to adapt to UC and live as 'normal' a life as possible. Virtually all patients tested and adopted non-medical adaptation methods to improve physical and psychological well-being, to help them carry on working and to prevent embarrassment. In addition, some patients benefited from outside support providing them with practical, emotional and/or financial help. In conjunction with adaptation strategies and the time to adapt, this meant that some patients with severe clinical disease were able to maintain a sense of normality in life. Patients reported that clinicians were not always receptive to discussion of the broader context of life with UC.
Patients' experience of UC and their ability to adapt in order to maintain a sense of normality in life is a complex interplay of symptoms, adaptation strategies and outside support. Over time patients test out a variety of non-medical adaptation strategies. Awareness of this may help clinicians and researchers to understand patients' views on the role of medical and other therapies. Further research around the utility of this framework in clinical practice and research is now required.
ISRCTN56523019, results.
提供一个框架，以确定患者是否能够适应并过上溃疡性结肠炎（UC）的“正常”生活，并详细说明影响这一点的因素。
使用深入的半结构化访谈的定性研究。
英格兰中西部和东安格利亚地区的四个临床地点。
28 名被诊断患有 UC 多年（1 至 22 年）的成年患者。
对于患者来说，药物很少能使他们适应 UC 并尽可能过上“正常”的生活。几乎所有患者都经过测试并采用了非药物适应方法来改善身心健康，帮助他们继续工作并防止尴尬。此外，一些患者受益于外部支持，为他们提供了实际、情感和/或经济帮助。加上适应策略和适应时间，这意味着一些患有严重临床疾病的患者能够维持生活的正常感。患者报告说，临床医生并不总是愿意讨论 UC 生活的更广泛背景。
患者对 UC 的体验及其为维持生活正常感而进行的适应能力是症状、适应策略和外部支持的复杂相互作用。随着时间的推移，患者会尝试各种非药物适应策略。了解这一点可能有助于临床医生和研究人员了解患者对医疗和其他疗法作用的看法。现在需要在临床实践和研究中围绕该框架的效用进行进一步研究。
ISRCTN56523019，结果。
