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

Forskningsoutput: TidskriftsbidragÖversiktsartikel

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.

Detaljer

Författare
  • Jonas F Ludvigsson
  • Marie Andersson
  • Jonas Bengtsson
  • Michael Eberhardson
  • Ulrika L Fagerberg
  • Olof Grip
  • Jonas Halfvarson
  • Henrik Hjortswang
  • Susanna Jäghult
  • Pontus Karling
  • Caroline Nordenvall
  • Ola Olén
  • Malin Olsson
  • Martin Rejler
  • Hans Strid
  • Pär Myrelid
Externa organisationer
  • Karolinska Institute
  • Linköping University
  • Umeå University
  • Karolinska University Hospital
  • Columbia University
  • South Elfsborg Hospital
  • Örebro University
  • Sahlgrenska University Hospital
  • Skåne University Hospital
  • Linköping University Hospital
  • Jönköping University
Forskningsområden

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Gastroenterologi
Originalspråkengelska
Sidor (från-till)1-13
Antal sidor13
TidskriftScandinavian Journal of Gastroenterology
StatusE-pub ahead of print - 2019 sep 9
PublikationskategoriForskning
Peer review utfördJa
Externt publiceradJa