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 = 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.

Keywords:

• Inflammatory bowel disease
• Crohn's disease
• ulcerative colitis
• patient reported outcome measure
• patient reported experience measure
• quality of life

Disclosure statement

Dr Ludvigsson coordinates a study on behalf of the Swedish IBD quality register (SWIBREG). None of the other authors have declared any conflicts of interest with regards to this manuscript.

All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf

Data sharing

Other researchers can apply for our data through the steering group of SWIBREG (see address to corresponding author Myrelid).

Transparency

The lead author affirms that this manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

Licence for publication

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Additional information

Funding

This study has received funding from Janssen Corporation. While this paper has received no specific funding, SWIBREG has received funding from the Swedish Association of Local Authorities and Regions (SALAR; Swedish: ‘SKL’).