Abstract

Background

Ulcerative colitis (UC) is a life-long disease characterised by flare ups and periods of remission. This market research sponsored by Janssen-Cilag Ltd was designed to gain an understanding of the impact of UC from the patient’s perspective and to establish the main unmet needs associated with it.

Methods

The market research was conducted by telephone among 30 patients in the UK with a diagnosis of moderate to severe UC.

Results

Delayed referral from primary care to secondary care was identified as the key unmet need. Hospital appointments were often unavailable for months and in some cases, it was 6 months before a procedure was performed. Specialists rarely involved the patient in discussions regarding diagnosis and initial treatment. Communications improved when treatment changes became necessary but gaps still existed particularly regarding the continued emotional impact of UC. All patients required treatment changes to regain or maintain control and the response to medications varied between patients. Patients who had transitioned through multiple treatments feared they would run out of options and therefore require surgery. The UC “journey” was highly individualized and patients experienced many emotional “ups and downs”.

Conclusions

Healthcare bodies should aim to improve earlier referral to secondary care and waiting times for investigation need to be reduced significantly. Patients felt that specialists could support them in understanding their condition by discussing it with them immediately following diagnosis and by involving them in the development of their individual treatment plans. There is a need for more effective and better tolerated medications to expand the armamentarium and thus reduce the need for surgery.

中文翻译：

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溃疡性结肠炎：了解溃疡性结肠炎对日常生活的影响并探索患者未满足的需求

摘要

背景

溃疡性结肠炎 (UC) 是一种终生疾病，其特征是突然发作和缓解期。这项由 Janssen-Cilag Ltd 赞助的市场研究旨在从患者的角度了解 UC 的影响，并确定与之相关的主要未满足需求。

方法

该市场调查是通过电话在英国诊断为中度至重度 UC 的 30 名患者中进行的。

结果

从初级保健到二级保健的延迟转诊被确定为主要的未满足需求。医院预约通常有几个月不可用，在某些情况下，手术需要 6 个月。专家很少让患者参与有关诊断和初始治疗的讨论。当治疗改变变得必要时，沟通有所改善，但差距仍然存在，特别是在 UC 的持续情绪影响方面。所有患者都需要改变治疗以重新获得或保持控制，并且患者对药物的反应各不相同。经历过多次治疗的患者担心他们会没有选择，因此需要手术。UC的“旅程”是高度个性化的，患者经历了许多情绪“起伏”。

结论

医疗机构应致力于改善早期转诊到二级医疗机构的情况，并需要显着减少调查的等待时间。患者认为专家可以通过在诊断后立即与他们讨论并让他们参与制定个人治疗计划来支持他们了解他们的病情。需要更有效且耐受性更好的药物来扩大医疗设备，从而减少手术需求。