Connor Susan J, Sechi Alexandra, Andrade Mauricio, Deuring J Jasper, Witcombe David
Department of Gastroenterology Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute of Applied Medical Research Liverpool New South Wales Australia.
Department of Gastroenterology Liverpool Hospital Liverpool New South Wales Australia.
JGH Open. 2021 Aug 14;5(9):1033-1040. doi: 10.1002/jgh3.12627. eCollection 2021 Sep.
The Global Ulcerative Colitis (UC) Narrative Survey aimed to evaluate the impact of UC, perceptions of UC burden, and management approaches. Here, we present data from patients and physicians in Australia.
Surveys, fielded by The Harris Poll, were completed by 215 patients with UC and 90 physicians, between August 2017 and February 2018. Surveys included questions on disease characteristics, impact on life, communication with physicians, and patient knowledge of UC. Results are presented descriptively from all respondents (with no imputation for missing data).
Based on medication history, 84% of patients had moderate to severe UC. Diagnostic delay was on average 1.9 (SD 5.0) years and 48% of patients had waited ≥1 year for diagnosis. Nearly two-thirds (65%) of patients considered themselves to be in remission, with 97% also reporting a flare in the past year. The majority (92%) of patients were satisfied with their UC medication and, if their treatment made them feel "good enough," many (75%) would not consider an alternative. Most (90%) patients were satisfied with communication with their physician; however, only 48% felt comfortable raising emotional concerns. Both patients and physicians desired more time during routine appointments. Patients had gaps in their knowledge of UC, which physicians mostly recognized.
The Australian survey results highlighted the diagnostic delay and burden of UC patients' experience, gaps in patients' knowledge of UC, and challenges in patient-physician communication. Compared with the overall Global UC Narrative Survey, patients in Australia reported a high burden of disease.
全球溃疡性结肠炎（UC）叙述性调查旨在评估UC的影响、对UC负担的认知以及管理方法。在此，我们展示来自澳大利亚患者和医生的数据。
由哈里斯民意调查公司开展的调查，于2017年8月至2018年2月期间由215名UC患者和90名医生完成。调查包括关于疾病特征、对生活的影响、与医生的沟通以及患者对UC的了解等问题。结果以描述性方式呈现所有受访者的数据（未对缺失数据进行插补）。
根据用药史，84%的患者患有中度至重度UC。诊断延迟平均为1.9（标准差5.0）年，48%的患者等待诊断时间≥1年。近三分之二（65%）的患者认为自己处于缓解期，97%的患者还报告在过去一年中有病情发作。大多数（92%）患者对其UC药物治疗满意，如果他们的治疗让他们感觉“足够好”，许多人（75%）不会考虑更换治疗方案。大多数（90%）患者对与医生的沟通感到满意；然而，只有48%的患者在提出情感方面的担忧时感到自在。患者和医生都希望在常规就诊时有更多时间。患者对UC的了解存在差距，医生大多认识到这一点。
澳大利亚的调查结果突出了UC患者经历的诊断延迟和负担、患者对UC了解的差距以及医患沟通中的挑战。与全球UC叙述性调查的总体情况相比，澳大利亚的患者报告了较高的疾病负担。
