Jonas F Ludvigsson1,2,3,4, Marie Andersson5, Jonas Bengtsson6, Michael Eberhardson7, Ulrika L Fagerberg8,9,10, Olof Grip11, Jonas Halfvarson12, Henrik Hjortswang13, Susanna Jäghult14, Pontus Karling15, Caroline Nordenvall16,17, Ola Olén18,19,20, Malin Olsson21, Martin Rejler22,23, Hans Strid5, Pär Myrelid21,24. 1. Department of Medical Epidemiology and Biostatistics, Karolinska Institutet , Stockholm , Sweden. 2. Department of Pediatrics, Örebro University Hospital , Örebro , Sweden. 3. Division of Epidemiology and Public Health, School of Medicine, University of Nottingham , Nottingham , UK. 4. Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons , New York , NY , USA. 5. Department of Internal Medicine, Södra Älvsborgs Hospital , Borås , Sweden. 6. Department of Surgery, Sahlgrenska University Hospital/Östra , Gothenburg , Sweden. 7. Department of Medicine, Karolinska Institutet , Stockholm , Sweden. 8. Center for Clinical Research, Västmanland Hospital, Västerås, Sweden and Uppsala University , Uppsala , Sweden. 9. Department of Pediatrics, Västmanland Hospital , Västerås , Sweden. 10. Department of Women´s and Children´s Health, Karolinska Institutet , Stockholm , Sweden. 11. Department of Gastroenterology, Skåne University Hospital , Malmö , Sweden. 12. Department of Gastroenterology, Faculty of Medicine and Health, Örebro University , Örebro , Sweden. 13. Department of Gastroenterology and Department of Clinical and Experimental Medicine, Linköping University , Linköping , Sweden. 14. Stockholm Gastro Center, Karolinska Institutet, Karolinska Institutet , Stockholm , Sweden. 15. Department of Public Health and Clinical Medicine, Umeå University , Umeå , Sweden. 16. Department of Molecular Medicine and Surgery, Karolinska Institutet , Stockholm , Sweden. 17. Department of Colorectal Cancer, Karolinska University Hospital , Stockholm , Sweden. 18. Sachs' Children and Youth Hospital, Stockholm South General Hospital , Stockholm , Sweden. 19. Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet , Stockholm , Sweden. 20. Clinical Epidemiology Division, Department of Medicine, Solna, Karolinska Institutet , Stockholm , Sweden. 21. Department of Surgery, County Council of Östergötland , Linköping , Sweden. 22. Department of Medicine, Höglandssjukhuset Eksjö, Region Jönköping County Council , Jönköping , Sweden. 23. Jönköping Academy for Improvement of Health and Welfare, Jönköping University , Jönköping , Sweden. 24. Department of Clinical and Experimental Medicine, Faculty of Health, Linköping University , Linköping , Sweden.
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.
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.
Authors: Sara Rundquist; Michael C Sachs; Carl Eriksson; Ola Olén; Scott Montgomery; Jonas Halfvarson Journal: Aliment Pharmacol Ther Date: 2020-12-19 Impact factor: 8.171
Authors: Michael Eberhardson; Pär Myrelid; Jonas K Söderling; Anders Ekbom; Åsa H Everhov; Charlotte R H Hedin; Martin Neovius; Jonas F Ludvigsson; Ola Olén Journal: Colorectal Dis Date: 2022-01-22 Impact factor: 3.917
Authors: Joel Thunberg; Olle Björkqvist; Charlotte R H Hedin; Anders Forss; Charlotte Söderman; Daniel Bergemalm; Ola Olén; Henrik Hjortswang; Hans Strid; Jonas F Ludvigsson; Carl Eriksson; Jonas Halfvarson Journal: United European Gastroenterol J Date: 2022-07-14 Impact factor: 6.866