Ludvigsson Jonas F, Andersson Marie, Bengtsson Jonas, Eberhardson Michael, Fagerberg Ulrika L, Grip Olof, Halfvarson Jonas, Hjortswang Henrik, Jäghult Susanna, Karling Pontus, Nordenvall Caroline, Olén Ola, Olsson Malin, Rejler Martin, Strid Hans, Myrelid Pär
Department of Medical Epidemiology and Biostatistics, Karolinska Institutet , Stockholm , Sweden.
Department of Pediatrics, Örebro University Hospital , Örebro , Sweden.
Scand J Gastroenterol. 2019 Sep;54(9):1089-1101. doi: 10.1080/00365521.2019.1660799. Epub 2019 Sep 9.
Inflammatory bowel disease (IBD) is a chronic, inflammatory relapsing disease with increasing incidence. IBD research and long-term follow-up of patients have, however, been hampered by lack of detailed data on disease phenotype, patient-reported outcome measures, Physician Global Assessment, disease activity, and hospital-administered drugs. To review the Swedish IBD quality register (SWIBREG). Review of SWIBREG including questionnaire data from users and patients. SWIBREG was launched in 2005, and as of April 2019, contains 46,400 patients with IBD (Crohn's disease: = 15,705, ulcerative colitis: = 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): = 9155). Of these IBD patients, 7778 had been diagnosed in childhood (16.8%). Earlier research has shown that combining SWIBREG and the Swedish National Patient Register (NPR) yields a positive predictive value of 100% (95%CI = 95-100%) for having a diagnosis of IBD. Moreover, out of all patients in the NPR with a diagnosis of IBD plus either IBD-related surgery or immunomodulatory/biological treatment during the past 18 months, SWIBREG covers 59.0%. SWIBREG records not only information on conventional therapies but also on biological treatment, surgery, smoking, disease activity, patient-reported outcome measures (PROMs), and patient-experienced measures (PREMs). Data are presented through a graphical decision support system. SWIBREG benefits patients with IBD, and offers an ideal opportunity for healthcare personnel and researchers to examine disease phenotype and activity, PROMs/PREMs, and hospital-administered drugs in patients with IBD.
炎症性肠病（IBD）是一种慢性、炎症复发性疾病，发病率呈上升趋势。然而，IBD的研究以及患者的长期随访一直受到疾病表型、患者报告结局指标、医生整体评估、疾病活动度和医院用药详细数据缺乏的阻碍。为了对瑞典IBD质量登记册（SWIBREG）进行综述。对SWIBREG进行综述，包括来自使用者和患者的问卷数据。SWIBREG于2005年启动，截至2019年4月，包含46400例IBD患者（克罗恩病：=15705例，溃疡性结肠炎：=21540例，未分类IBD和其他结肠炎（包括例如显微镜下结肠炎）：=9155例）。在这些IBD患者中，7778例在儿童期被诊断（16.8%）。早期研究表明，将SWIBREG和瑞典国家患者登记册（NPR）相结合，对IBD诊断的阳性预测值为100%（95%CI=95-100%）。此外，在NPR中所有在过去18个月内诊断为IBD并接受IBD相关手术或免疫调节/生物治疗的患者中，SWIBREG涵盖了59.0%。SWIBREG不仅记录传统治疗信息，还记录生物治疗、手术、吸烟、疾病活动度、患者报告结局指标（PROMs）和患者体验指标（PREMs）。数据通过图形决策支持系统呈现。SWIBREG使IBD患者受益，并为医护人员和研究人员提供了一个理想的机会，来研究IBD患者的疾病表型和活动度、PROMs/PREMs以及医院用药情况。
