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

Ludvigsson, Jonas F ; Andersson, Marie ; Bengtsson, Jonas ; Eberhardson, Michael ; Fagerberg, Ulrika L ; Grip, Olof LU ; Halfvarson, Jonas ; Hjortswang, Henrik ; Jäghult, Susanna and Karling, Pontus , et al. (2019) In Scandinavian Journal of Gastroenterology 54(9). p.1089-1101
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... (More)

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.

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publishing date
type
Contribution to journal
publication status
published
subject
in
Scandinavian Journal of Gastroenterology
volume
54
issue
9
pages
1089 - 1101
publisher
Informa Healthcare
external identifiers
  • scopus:85072067137
  • pmid:31498717
ISSN
1502-7708
DOI
10.1080/00365521.2019.1660799
language
English
LU publication?
no
id
0879b513-b1b4-425e-a3bc-1b56747e6639
date added to LUP
2019-09-12 08:38:15
date last changed
2025-04-17 06:14:47
@article{0879b513-b1b4-425e-a3bc-1b56747e6639,
  abstract     = {{<p>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.</p>}},
  author       = {{Ludvigsson, Jonas F and Andersson, Marie and Bengtsson, Jonas and Eberhardson, Michael and Fagerberg, Ulrika L and Grip, Olof and Halfvarson, Jonas and Hjortswang, Henrik and Jäghult, Susanna and Karling, Pontus and Nordenvall, Caroline and Olén, Ola and Olsson, Malin and Rejler, Martin and Strid, Hans and Myrelid, Pär}},
  issn         = {{1502-7708}},
  language     = {{eng}},
  month        = {{09}},
  number       = {{9}},
  pages        = {{1089--1101}},
  publisher    = {{Informa Healthcare}},
  series       = {{Scandinavian Journal of Gastroenterology}},
  title        = {{Swedish Inflammatory Bowel Disease Register (SWIBREG) - a nationwide quality register}},
  url          = {{http://dx.doi.org/10.1080/00365521.2019.1660799}},
  doi          = {{10.1080/00365521.2019.1660799}},
  volume       = {{54}},
  year         = {{2019}},
}