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Swedish Inflammatory Bowel Disease Register (SWIBREG) -: a nationwide quality register
Karolinska Inst, Dept Med Epidemiol & Biostat, Stockholm, Sweden;Orebro Univ Hosp, Dept Pediat, Orebro, Sweden;Univ Nottingham, Sch Med, Div Epidemiol & Publ Hlth, Nottingham, England;Columbia Univ, Coll Phys & Surg, Celiac Dis Ctr, Dept Med, New York, NY USA.
Sodra Alvsborgs Hosp, Dept Internal Med, Boras, Sweden.
Sahlgrens Univ Hosp, Dept Surg, Gothenburg, Sweden.
Karolinska Inst, Dept Med, Stockholm, Sweden.
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2019 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 54, no 9, p. 1089-1101Article, review/survey (Refereed) Published
Abstract [en]

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 = 15,705, ulcerative colitis: n = 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): n = 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. 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 hospital-administered drugs in patients with IBD.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD , 2019. Vol. 54, no 9, p. 1089-1101
Keywords [en]
Inflammatory bowel disease, Crohn's disease, ulcerative colitis, patient reported outcome measure, patient reported experience measure, quality of life
National Category
Gastroenterology and Hepatology
Identifiers
URN: urn:nbn:se:uu:diva-396175DOI: 10.1080/00365521.2019.1660799ISI: 000485641200001PubMedID: 31498717OAI: oai:DiVA.org:uu-396175DiVA, id: diva2:1368126
Available from: 2019-11-06 Created: 2019-11-06 Last updated: 2019-11-06

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