Division of Gastroenterology and Hepatology, Department of Internal Medicine, Toho University Sakura Medical Center, 564-1 Shimoshizu, Sakura, Chiba, 285-8741, Japan.
Section of Clinical Epidemiology, Department of Community Medicine, Graduate School of Medicine, Kyoto University, Kyoto, Japan.
J Gastroenterol. 2023 Aug;58(8):751-765. doi: 10.1007/s00535-023-02005-7. Epub 2023 Jun 23.
The YOu and Ulcerative colitis: Registry and Social network (YOURS) is a large-scale, multicenter, patient-focused registry investigating the effects of lifestyle, psychological factors, and clinical practice patterns on patient-reported outcomes in patients with ulcerative colitis in Japan. In this initial cross-sectional baseline analysis, we comprehensively explored impacts of symptom severity or proctocolectomy on nine patient-reported outcomes.
Patients receiving tertiary care at medical institutions were consecutively enrolled in the YOURS registry. The patients completed validated questionnaires on lifestyle, psychosocial factors, and disease-related symptoms. Severity of symptoms was classified with self-graded stool frequency and rectal bleeding scores (categories: remission, active disease [mild, moderate, severe]). The effects of symptom severity or proctocolectomy on nine scales for quality of life, fatigue, anxiety/depression, work productivity, and sleep were assessed by comparing standardized mean differences of the patient-reported outcome scores.
Of the 1971 survey responses analyzed, 1346 (68.3%) patients were in remission, 583 (29.6%) had active disease, and 42 (2.1%) had undergone proctocolectomy. A linear relationship between increasing symptom severity and worsening quality of life, fatigue, anxiety, depression, and work productivity was observed. Patients with even mild symptoms had worse scores than patients in remission. Patients who had undergone proctocolectomy also had worse scores than patients in remission.
Ulcerative colitis was associated with reduced mood, quality of life, fatigue, and work productivity even in patients with mild symptoms, suggesting that management of active ulcerative colitis may improve patient-reported outcomes irrespective of disease severity. (UMIN Clinical Trials Registry: UMIN000031995, https://www.umin.ac.jp/ctr/index-j.htm ).
《溃疡性结肠炎患者与你：注册和社交网络（YOURS）》是一项大规模、多中心、以患者为中心的研究，旨在调查日本溃疡性结肠炎患者的生活方式、心理因素和临床实践模式对患者报告结局的影响。在这项初步的横断面基线分析中，我们全面探讨了症状严重程度或结肠切除术对 9 项患者报告结局的影响。
在医疗机构接受三级护理的患者连续入组 YOURS 注册研究。患者完成了生活方式、心理社会因素和疾病相关症状的验证性问卷。症状严重程度采用自我评定的粪便频率和直肠出血评分进行分类（类别：缓解期、活动期[轻度、中度、重度]）。通过比较患者报告结局评分的标准化均数差值，评估症状严重程度或结肠切除术对 9 个生活质量、疲劳、焦虑/抑郁、工作效率和睡眠量表的影响。
在分析的 1971 份调查应答中，1346 例（68.3%）患者处于缓解期，583 例（29.6%）处于活动期，42 例（2.1%）接受了结肠切除术。随着症状严重程度的增加，生活质量、疲劳、焦虑、抑郁和工作效率逐渐恶化。即使是轻度症状的患者，其评分也比缓解期患者差。接受结肠切除术的患者评分也比缓解期患者差。
溃疡性结肠炎即使在轻度症状患者中也与情绪、生活质量、疲劳和工作效率下降相关，提示积极治疗溃疡性结肠炎可能改善患者报告结局，而与疾病严重程度无关。（UMIN 临床研究注册：UMIN000031995，https://www.umin.ac.jp/ctr/index-j.htm）。
