Background

Medical therapy for inflammatory bowel disease (IBD) should have dual goals of improving symptoms and mucosal healing. Patient-reported outcomes (PROs) used for approval of ulcerative colitis (UC) treatments include number of bowel movements and bloody stools.[1] Recent research highlights the discordance between PROs and mucosal healing.[2] The aim of this analysis is to understand patient perspectives on UC symptoms and disease burden based on a cross-sectional survey of UC patients. We hypothesised that UC patients experience disease activity despite treatment and that current PROs fail to capture the full impact of disease activity on patients’ lives.

Methods

The IBD In America survey recruited patients via InflammatoryBowelDisease.net and associated social platforms in 2019. Patients self-reported an IBD diagnosis, were 18+, lived in U.S., and participated without monetary incentive. Survey questions addressed diagnosis, symptoms, QoL, treatment, demographics, etc. Survey terms were based on how patients discuss UC in the IBD online community. Remission was defined as ‘significant reduction of symptoms without an actual cure.’ Flare was defined as ‘temporary intensification of symptoms.’ Patients were categorised by disease activity based on number of flares and remission status during the past year.

Results

Of 487 patients diagnosed with UC, mean age was 45.6 (SD 16.0); 85% were female; 89% moderate to severe; 78% diagnosed in past 5 years; and 51% taking 5ASAs, 37% biologics/JAKs, and 23% immunomodulators. Despite treatment, 46% experienced 15+ symptom days in the past month. Fatigue/low energy was most frequent complaint (86%) followed by urgency to move bowels (80%), abdominal pain/cramps (76%), joint pain/inflammation (67%), and bloating (66%). Daily pain was experienced by 32%; even patients in remission with no flares experienced pain at least once a month (55%). Difficulty completing daily tasks was reported by 37%, and 27% felt their UC was not controlled despite efforts to manage it. Only 7% reported being in remission with no flares (past year) and no symptoms (past month).

Conclusion

Most UC patients experience frequent symptoms and flares while on treatment. The most common and bothersome symptoms are not taken into account in PROs nor addressed with current treatment. A more holistic approach to patient disease is needed.

Reference

• Partial Mayo Scoring Index [2] Ma, C., Sandborn, W.J., D’Haens, G.R., Zou, G., Stitt, L.W., Singh, S., Ananthakrishnan, A.N., Dulai, P.S., Khanna, R., Jairath, V.l., & Feagan, B.G. (in press). Discordance between patient-reported outcomes and mucosal inflammation in patients with mild to moderate ulcerative colitis. Clinical Gastroenterology and Hepatology. doi: 10.1016/j.cgh.2019.09.021

中文翻译：

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P157使用社交媒体提供的问卷在大批溃疡性结肠炎患者中报告的疾病活动

背景

炎症性肠病（IBD）的药物治疗应具有改善症状和粘膜愈合的双重目标。用于批准溃疡性结肠炎（UC）治疗的患者报告结局（PRO）包括排便次数和大便便血。[1] 最近的研究突出了PRO和黏膜愈合之间的矛盾。[2] 该分析的目的是基于对UC患者的横断面调查，了解患者对UC症状和疾病负担的观点。我们假设，尽管接受了治疗，但UC患者仍会经历疾病活动，而目前的PRO并不能完全反映疾病活动对患者生活的全面影响。

方法

IBD在美国的调查于2019年通过InflammatoryBowelDisease.net和相关的社交平台招募了患者。患者自我报告为IBD诊断，年龄在18岁以上，居住在美国，并且在没有金钱激励的情况下参加。调查问题涉及诊断，症状，生活质量，治疗，人口统计学等。调查术语基于患者如何在IBD在线社区中讨论UC。缓解被定义为“在没有实际治愈的情况下症状明显减轻”。耀斑被定义为“症状的暂时加剧”。在过去的一年中，根据患者的疾病活动情况根据发作次数和缓解情况对其进行了分类。

结果

在487名被诊断为UC的患者中，平均年龄为45.6（SD 16.0）。女性占85％；89％中度至重度；在过去5年中，有78％被诊断出；和51％服用5ASA，37％生物制剂/ JAK和23％免疫调节剂。尽管接受了治疗，但仍有46％的患者在过去一个月中出现15天以上的症状。疲劳/精力低下是最常见的主诉（86％），其次是排便的紧迫感（80％），腹痛/抽筋（76％），关节痛/发炎（67％）和腹胀（66％）。每天有32％的人感到疼痛；即使是没有发作的缓解患者，每月也至少经历一次疼痛（55％）。据报告，有37％的人难以完成日常任务，而有27％的人认为，尽管他们进行了努力，但他们的UC没有得到控制。仅有7％的患者报告缓解，没有耀斑（过去一年），没有症状（过去一个月）。

结论

大多数UC患者在治疗期间会出现频繁的症状和耀斑。PROs并未考虑最常见和烦人的症状，目前的治疗方法也未解决这些症状。需要一种更全面的方法来治疗患者疾病。

参考

• 部分Mayo评分指数[2]马·C·桑德博恩·WJ·达恩斯·GR·邹·G·斯蒂特·LW·辛格·S·阿南塔克里希南·AN·杜莱·PS哈纳·R·贾伊勒斯，Vl和Feagan，BG（印刷中）。轻度至中度溃疡性结肠炎患者报告的结局与粘膜炎症之间的不一致。临床胃肠病学和肝病学。doi：10.1016 / j.cgh.2019.09.021