Ulcerative colitis progression: a retrospective analysis of disease burden using electronic medical records

Keywords: Ulcerative colitis, health economics, inflammation, outcomes research, inflammatory bowel disease


Background: Ulcerative colitis (UC) is a debilitating inflammatory bowel disease. Present knowledge regarding UC disease progression over time is limited.

Objective: To assess UC progression to severe disease along with disease burden and associated factors.

Methods: Electronic medical records linked with Swedish national health registries (2005–2015) were used to identify disease progression of UC. Odds of all-cause and disease-related hospitalization within 1 year were compared between patients with disease progression and those without. Annual indirect costs were calculated based on sick leave, and factors related to UC progression were examined.

Results: Of the 1,361 patients with moderate UC, 24% progressed to severe disease during a median of 5.2 years. Severe UC had significantly higher odds for all-cause (OR [odds ratio] 1.47, 95% CI [confidence interval]: 1.12–1.94, P < 0.01) and UC-related hospitalization (OR 2.47, 95% CI: 1.76–3.47, P < 0.0001) compared to moderate disease. Average sick leave was higher in patients who progressed compared to those who did not (64.4 vs 38.6 days, P < 0.001), with higher indirect costs of 151,800 SEK (16,415 €) compared with 92,839 SEK (10,039 €) (P < 0.001), respectively. UC progression was related to young age (OR 1.62, 95% CI: 1.17–2.25, P < 0.01), long disease duration (OR 1.09, 95% CI: 1.03–1.15, P < 0.001), and use of corticosteroids (OR 2.49, 95% CI: 1.67–3.72, P < 0.001).

Conclusion: Disease progression from moderate to severe UC is associated with more frequent and longer hospitalizations and sick leave. Patients at young age with long disease duration and more frequent glucocorticosteroid medication are associated with progression to severe UC.


Download data is not yet available.


1. Magro F, Gionchetti P, Eliakim R, Ardizzone S, Armuzzi A, Barreiro-de Acosta M, et al. Third European evidence-based consensus on diagnosis and management of ulcerative colitis. Part 1: definitions, diagnosis, extra-intestinal manifestations, pregnancy, cancer surveillance, surgery, and ileo-anal pouch disorders. J Crohns Colitis. 2017;11:649–70. doi: 10.1093/ecco-jcc/jjx008

2. Sjoberg D, Holmstrom T, Larsson M, Nielsen AL, Holmquist L, Ekbom A, et al. Incidence and natural history of ulcerative colitis in the Uppsala Region of Sweden 2005–2009 – results from the IBD cohort of the Uppsala Region (ICURE). J Crohns Colitis. 2013;7:e351–7. doi: 10.1016/j.crohns.2013.02.006

3. Gibson PR, Vaizey C, Black CM, Nicholls R, Weston AR, Bampton P, et al. Relationship between disease severity and quality of life and assessment of health care utilization and cost for ulcerative colitis in Australia: a cross-sectional, observational study. J Crohns Colitis. 2014;8:598–606. doi: 10.1016/j.crohns.2013.11.017

4. Farrell D, McCarthy G, Savage E. Self-reported symptom burden in individuals with inflammatory bowel disease. J Crohns Colitis. 2016;10:315–22. doi: 10.1093/ecco-jcc/jjv218

5. Van Assche G, Peyrin-Biroulet L, Sturm A, Gisbert JP, Gaya DR, Bokemeyer B, et al. Burden of disease and patient-reported outcomes in patients with moderate to severe ulcerative colitis in the last 12 months – multicenter European cohort study. Dig Liver Dis. 2016;48:592–600. doi: 10.1016/j.dld.2016.01.011

6. Casellas F, Arenas JI, Baudet JS, Fabregas S, Garcia N, Gelabert J, et al. Impairment of health-related quality of life in patients with inflammatory bowel disease: a Spanish multicenter study. Inflamm Bowel Dis. 2005;11:488–96. doi: 10.1097/01.MIB.0000159661.55028.56

7. Harbord M, Eliakim R, Bettenworth D, Karmiris K, Katsanos K, Kopylov U, et al. Third European evidence-based consensus on diagnosis and management of ulcerative colitis. Part 2: current management. J Crohns Colitis. 2017;11:769–84. doi: 10.1093/ecco-jcc/jjx009

8. Bressler B, Marshall JK, Bernstein CN, Bitton A, Jones J, Leontiadis GI, et al. Clinical practice guidelines for the medical management of nonhospitalized ulcerative colitis: the Toronto consensus. Gastroenterology. 2015;148:1035–58.e3. doi: 10.1053/j.gastro.2015.03.001

9. Danese S, Allez M, van Bodegraven AA, Dotan I, Gisbert JP, Hart A, et al. Unmet medical needs in ulcerative colitis: an expert group consensus. Dig Dis. 2019;37:266–83. doi: 10.1159/000496739

10. Lonnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life – discovering the true impact. J Crohns Colitis. 2014;8:1281–6. doi: 10.1016/j.crohns.2014.03.005

11. Burisch J, Jess T, Martinato M, Lakatos PL. The burden of inflammatory bowel disease in Europe. J Crohns Colitis. 2013;7:322–37. doi: 10.1016/j.crohns.2013.01.010

12. Gibson TB, Ng E, Ozminkowski RJ, Wang S, Burton WN, Goetzel RZ, et al. The direct and indirect cost burden of Crohn’s disease and ulcerative colitis. J Occup Environ Med. 2008;50:1261–72. doi: 10.1097/JOM.0b013e318181b8ca

13. Ringborg A, Martinell M, Stalhammar J, Yin DD, Lindgren P. Resource use and costs of type 2 diabetes in Sweden – estimates from population-based register data. Int J Clin Pract. 2008;62:708–16. doi: 10.1111/j.1742-1241.2008.01716.x

14. Kjeldsen SE, Stalhammar J, Hasvold P, Bodegard J, Olsson U, Russell D. Effects of losartan vs candesartan in reducing cardiovascular events in the primary treatment of hypertension. J Hum Hypertens. 2010;24:263–73. doi: 10.1038/jhh.2009.77

15. Lindgren P, Borgstrom F, Stalhammar J, Alemao E, Yin DD, Jonsson L. Association between achieving treatment goals for lipid-lowering and cardiovascular events in real clinical practice. Eur J Cardiovasc Prev Rehabil. 2005;12:530–4. doi: 10.1097/01.hjr.0000160724.05165.dc

16. Wettermark B, Hammar N, Fored CM, Leimanis A, Otterblad Olausson P, Bergman U, et al. The new Swedish Prescribed Drug Register – opportunities for pharmacoepidemiological research and experience from the first six months. Pharmacoepidemiol Drug Saf. 2007;16:726–35. doi: 10.1002/pds.1294

17. Bartko J, Schoergenhofer C, Schwameis M, Firbas C, Beliveau M, Chang C, et al. A randomized, first-in-human, healthy volunteer trial of sutimlimab, a humanized antibody for the specific inhibition of the classical complement pathway. Clin Pharmacol Ther. 2018;104:655–63. doi: 10.1002/cpt.1111

18. Roda G, Narula N, Pinotti R, Skamnelos A, Katsanos KH, Ungaro R, et al. Systematic review with meta-analysis: proximal disease extension in limited ulcerative colitis. Aliment Pharmacol Ther. 2017;45:1481–92. doi: 10.1111/apt.14063

19. Busch K, Ludvigsson JF, Ekstrom-Smedby K, Ekbom A, Askling J, Neovius M. Nationwide prevalence of inflammatory bowel disease in Sweden: a population-based register study. Aliment Pharmacol Ther. 2014;39:57–68. doi: 10.1111/apt.12528

20. Rönnblom A, Holmström T, Tanghöj H, Karlbom U, Thorn M, Sjoberg D. Low colectomy rate five years after diagnosis of ulcerative colitis. Results from a prospective population-based cohort in Sweden (ICURE) diagnosed during 2005–2009. Scand J Gastroenterol. 2016;51:1339–44. doi: 10.1080/00365521.2016.1200141

21. Solberg IC, Lygren I, Jahnsen J, Aadland E, Hoie O, Cvancarova M, et al. Clinical course during the first 10 years of ulcerative colitis: results from a population-based inception cohort (IBSEN study). Scand J Gastroenterol. 2009;44:431–40. doi: 10.1080/00365520802600961

22. Bopanna S, Ananthakrishnan AN, Kedia S, Yajnik V, Ahuja V. Risk of colorectal cancer in Asian patients with ulcerative colitis: a systematic review and meta-analysis. Lancet Gastroenterol Hepatol. 2017;2:269–76. doi: 10.1016/S2468-1253(17)30004-3

23. Bopanna S, Kedia S, Das P, Dattagupta S, Sreenivas V, Mouli VP, et al. Long-term follow-up reveals high incidence of colorectal cancer in Indian patients with inflammatory bowel disease. United European Gastroenterol J. 2017;5:708–14. doi: 10.1177/2050640616680552

24. Castano-Milla C, Chaparro M, Gisbert JP. Systematic review with meta-analysis: the declining risk of colorectal cancer in ulcerative colitis. Aliment Pharmacol Ther. 2014;39:645–59. doi: 10.1111/apt.12651

25. Jess T, Rungoe C, Peyrin-Biroulet L. Risk of colorectal cancer in patients with ulcerative colitis: a meta-analysis of population-based cohort studies. Clin Gastroenterol Hepatol. 2012;10:639–45. doi: 10.1016/j.cgh.2012.01.010

26. Kim B, Park SJ, Hong SP, Kim TI, Kim WH, Cheon JH. Proximal disease extension and related predicting factors in ulcerative proctitis. Scand J Gastroenterol. 2014;49:177–83. doi: 10.3109/00365521.2013.867360

27. Etchevers MJ, Aceituno M, Garcia-Bosch O, Ordas I, Sans M, Ricart E, et al. Risk factors and characteristics of extent progression in ulcerative colitis. Inflamm Bowel Dis. 2009;15:1320–5. doi: 10.1002/ibd.20897

28. Meucci G, Vecchi M, Astegiano M, Beretta L, Cesari P, Dizioli P, et al. The natural history of ulcerative proctitis: a multicenter, retrospective study. Gruppo di Studio per le Malattie Infiammatorie Intestinali (GSMII). Am J Gastroenterol. 2000;95:469–73. doi: 10.1111/j.1572-0241.2000.t01-1-01770.x

29. Siebert U, Wurm J, Gothe RM, Arvandi M, Vavricka SR, von Kanel R, et al. Predictors of temporary and permanent work disability in patients with inflammatory bowel disease: results of the swiss inflammatory bowel disease cohort study. Inflamm Bowel Dis. 2013;19:847–55. doi: 10.1097/MIB.0b013e31827f278e

30. Burisch J, Katsanos KH, Christodoulou DK, Barros L, Magro F, Pedersen N, et al. Natural disease course of ulcerative colitis during the first five years of follow-up in a European population-based inception cohort-an Epi-IBD study. J Crohns Colitis. 2019;13:198–208. doi: 10.1093/ecco-jcc/jjy154

31. Khalili H, Everhov Å H, Halfvarson J, Ludvigsson JF, Askling J, Myrelid P, et al. Healthcare use, work loss and total costs in incident and prevalent Crohn’s disease and ulcerative colitis: results from a nationwide study in Sweden. Aliment Pharmacol Ther. 2020;52:655–68. doi: 10.1111/apt.15889

32. Lamb CA, Kennedy NA, Raine T, Hendy PA, Smith PJ, Limdi JK, et al. British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults. Gut. 2019;68:s1–s106. doi: 10.1136/gutjnl-2019-318484

33. Ungaro R, Colombel JF, Lissoos T, Peyrin-Biroulet L. A treat-to-target update in ulcerative colitis: a systematic review. Am J Gastroenterol. 2019;114:874–83. doi: 10.14309/ajg.0000000000000183

34. Rubin DT, Ananthakrishnan AN, Siegel CA, Sauer BG, Long MD. ACG clinical guideline: ulcerative colitis in adults. Am J Gastroenterol. 2019;114:384–413. doi: 10.14309/ajg.0000000000000152

35. Peyrin-Biroulet L, Sandborn W, Sands BE, Reinisch W, Bemelman W, Bryant RV, et al. Selecting therapeutic targets in inflammatory bowel disease (STRIDE): determining therapeutic goals for treat-to-target. Am J Gastroenterol. 2015;110:1324–38. doi: 10.1038/ajg.2015.233

36. Feuerstein JD, Isaacs KL, Schneider Y, Siddique SM, Falck-Ytter Y, Singh S. AGA clinical practice guidelines on the management of moderate to severe ulcerative colitis. Gastroenterology. 2020;158:1450–61. doi: 10.1053/j.gastro.2020.01.006

37. Joseph N, Lindblad I, Zaker S, Elfversson S, Albinzon M, Ødegård Ø, et al. Automated data extraction of electronic medical records: validity of data mining to construct research databases for eligibility in gastroenterological clinical trials. Ups J Med Sci. 2022;127:1–6. doi: http://dx.doi.org/10.48101/ujms.v127.8260
How to Cite
Dahlgren D., Agréus L., Stålhammar J., & Hellström P. M. (2022). Ulcerative colitis progression: a retrospective analysis of disease burden using electronic medical records. Upsala Journal of Medical Sciences, 127(1). https://doi.org/10.48101/ujms.v127.8833
Original Articles