Swedish Inflammatory Bowel Disease Register (SWIBREG) – a nationwide quality register

Abstract

Background: 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. Aim: To review the Swedish IBD quality register (SWIBREG). Methods: Review of SWIBREG including questionnaire data from users and patients. Results: SWIBREG was launched in 2005, and as of April 2019, contains 46,400 patients with IBD (Crohn's disease: n ¼ 15,705, ulcerative colitis: n ¼ 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): n ¼ 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 ¼ 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. Conclusion: SWIBREG benefits patients with IBD, and offers an ideal opportunity for healthcare personnel and researchers to examine disease phenotype and activity, PROMs/PREMs, and hospitaladministered drugs in patients with IBD.

The use of ICD codes to identify IBD subtypes and phenotypes of the Montreal classification in the Swedish National Patient Register

“…In early 2019, the SWIBREG contained information on 46,400 IBD patients [8]. This register has been described in detail elsewhere [8].…”

“…In early 2019, the SWIBREG contained information on 46,400 IBD patients [8]. This register has been described in detail elsewhere [8]. In short, the register includes information on diagnosis, disease duration, medication, endoscopy data, surgery, prescribed and administered drugs, extent/location of inflammation, disease behaviour, patient reported outcomes, and quality of life measures [8].…”

<p>A Novel Method for Quantifying Intestinal Inflammatory Burden in Inflammatory Bowel Disease Using Register Data</p>

“…36 SWIBREG contains clinical IBD data that are either missing in the NPR or lacking in detail, including disease duration, extent, surgery, prescribed and administered drugs as well as their side-effects, disease activity and complications, and laboratory data. 29,37,38 While SWIBREG was established in 2005, it contains information on patients diagnosed as early as 1996 through chart review. The ESPRESSO study, comprising gastrointestinal histopathology coded by location (topography) and histologic appearance (morphology) was also used.…”

“…Data from SWIBREG included location of endoscopic assessment (using text descriptions of location; Supplemental Table 2), and endoscopic scoring (Mayo score for UC 40 and SWIBREG-CD score for CD). 21,29 Data from ESPRESSO included morphology (Morphology codes; Supplemental Table 3) and topography (6-digit topography codes; Supplemental Table 2). Morphology codes ranged from normal to more severe abnormalities.…”

“…28 The Swedish Quality Register for IBD (SWIBREG, governed by the Swedish Societies of Gastroenterology, Pediatric Gastroenterology, Colorectal Surgery, and Gastroenterological Nursing), established in 2005, contains detailed clinical IBD data, including disease characteristics and endoscopic measures of disease activity. 29 SWIBREG has a national coverage of more than 60%, with 50,780 registered patients as of March 2020, but only a minority have complete, longitudinal information regarding endoscopic activity required for the assessment of EH. The ESPRESSO (Epidemiology Strengthened by histoPathology Reports in Sweden) study, established in 2017, comprises histopathology data between 1965 and 2017 coded by SNOMED from all 28 pathology departments in Sweden from the gastrointestinal tract (pharynx to anus) and has high coverage since the mid-1990s.…”