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Swedish Inflammatory Bowel Disease Register (SWIBREG) : a nationwide quality register
- Publication Year :
- 2019
- Publisher :
- Linköpings universitet, Medicinska fakulteten, 2019.
-
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 (Crohns 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. Funding Agencies|Janssen Corporation; Swedish Association of Local Authorities and Regions (SALAR; Swedish: SKL)
- Subjects :
- medicine.medical_specialty
patient reported experience measure
media_common.quotation_subject
Disease
Gastroenterology and Hepatology
digestive system
Inflammatory bowel disease
tient reported experience measure
03 medical and health sciences
0302 clinical medicine
Quality of life (healthcare)
Internal medicine
Gastroenterologi
Medicine
Humans
Quality (business)
Patient Reported Outcome Measures
Registries
Crohns disease
ulcerative colitis
patient reported outcome measure
quality of life
media_common
Sweden
Crohn's disease
business.industry
Incidence (epidemiology)
Gastroenterology
medicine.disease
Inflammatory Bowel Diseases
Ulcerative colitis
digestive system diseases
030220 oncology & carcinogenesis
Quality of Life
030211 gastroenterology & hepatology
business
Subjects
Details
- Language :
- English
- Database :
- OpenAIRE
- Accession number :
- edsair.doi.dedup.....301d3a4c50b275528aedd6455b0119bc