Intest Res.  2018 Oct;16(4):537-545. 10.5217/ir.2018.00041.

IBD2020 global forum: results of an international patient survey on quality of care

• Irving P
• Burisch J
• Driscoll R
• Olsson M
• Fullarton
• Rodgers-Gray BS
• Travis SP

• KMID: 2434155
• DOI: http://doi.org/10.5217/ir.2018.00041

Abstract

BACKGROUND/AIMS
IBD2020 is a global forum for standards of care in inflammatory bowel disease (IBD). The aim of the IBD2020 survey was to identify and describe variations in quality care of IBD.
METHODS
Patients with IBD from Finland, Italy, France, Canada, Germany, UK, Spain and Sweden were surveyed during 2013 to 2014, covering: disease characteristics; impact on life and work; organization and perceived quality of care.
RESULTS
Seven thousand five hundred and seven patients participated (median age, 39 years [range, 10-103 years]; 2,354 male [31.4%]), including 4,097 (54.6%) with Crohn's disease (CD) and 3,410 (45.4%) with ulcerative colitis (UC). Median time from symptom onset to diagnosis was 1 year for both CD (range, 0-47 years) and UC (range, 0-46 years), with no clear evidence of improvement in diagnostic delay over the preceding 24 years. Half of the patients (3,429; 50.0%) rated their care as "excellent" or "very good," with similar results for CD and UC across countries. Five factors were significantly (P < 0.01) associated with perceived good quality of care: quality of specialist communication; review consultation being long enough; failure to share information; no access to a dietician; speed of advice.
CONCLUSIONS
The IBD2020 survey has highlighted areas related to quality of care of IBD from the patients' perspective, with scope for improvement.

Keyword

Inflammatory bowel disease; Crohn disease; Colitis, ulcerative; Surveys and questionnaires; Quality of health care

MeSH Terms

Canada
Colitis, Ulcerative
Crohn Disease
Diagnosis
Finland
France
Germany
Humans
Inflammatory Bowel Diseases
Italy
Male
Nutritionists
Quality of Health Care
Spain
Specialization
Standard of Care
Surveys and Questionnaires
Sweden

Figure

• 

  Fig. 1. Period of time between first seeking medical care for symptoms and confirmed diagnosis (n=7,507). P=0.319 for difference in time to diagnosis over study period (Kruskal-Wallis H test).

• 

  Fig. 2. Primary healthcare provider for respondents.

• 

  Fig. 3. Important topics in IBD discussed by healthcare provider and respondent within 3 months of diagnosis.

• 

  Fig. 4. Respondents’ access to healthcare professionals. Other specialists include: rheumatologist and dermatologist. Significant differences (Mann-Whitney U-test) between countries for all specialties (P<0.001), except rheumatologist (P=0.022) or social worker (P=0.720).

• 

  Fig. 5. Respondent rated quality of care. P=0.003 for difference in high (excellent and very good) and low (fair and poor) quality of care for CD and UC (Mann-Whitney U-test).

Reference

1. Molodecky NA, Soon IS, Rabi DM, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012; 142:46–54. e42.

2. Alrubaiy L, Arnott I, Protheroe A, Roughton M, Driscoll R, Williams JG. Inflammatory bowel disease in the UK: is quality of care improving? Frontline Gastroenterol. 2013; 4:296–301.

3. David G, Gunnarsson CL, Lofland J, Goodney P, Siegel CA. Mo1362 Geographic variation in care of patients with inflammatory bowel disease suggests unequal quality of care in the United States. Gastroenterology. 2013; 144(5 Suppl 1):S-647.

4. Weaver KN, Kappelman MD, Sandler RS, et al. Variation in care of inflammatory bowel diseases patients in Crohn’s and Colitis Foundation of America Partners: role of gastroenterologist practice setting in disease outcomes and quality process measures. 2016; 22:2672–2677.

5. Vienne A, Simon T, Cosnes J, et al. Low prevalence of colonoscopic surveillance of inflammatory bowel disease patients with longstanding extensive colitis: a clinical practice survey nested in the CESAME cohort. Aliment Pharmacol Ther. 2011; 34:188–195.

6. Wilson B, Lonnfors S, Hommes DW, et al. P406 A European Crohn’s and ulcerative colitis patient life IMPACT survey. J Crohns Colitis. 2012; 6(Suppl 1):S171.

7. Bouguen G, Peyrin-Biroulet L. Surgery for adult Crohn’s disease: what is the actual risk? Gut. 2011; 60:1178–1181.

8. Mikocka-Walus A, Andrews JM, Rampton D, Goodhand J, van der Woude J, Bernstein CN. How can we improve models of care in inflammatory bowel disease? An international survey of IBD health professionals. J Crohns Colitis. 2014; 8:1668–1674.

9. Benchimol EI, Cook SF, Erichsen R, et al. International variation in medication prescription rates among elderly patients with inflammatory bowel disease. J Crohns Colitis. 2013; 7:878–889.

10. Song HK, Lee KM, Jung SA, et al. Quality of care in inflammatory bowel disease in Asia: the results of a multinational webbased survey in the 2(nd) Asian Organization of Crohn’s and Colitis (AOCC) meeting in Seoul. Intest Res. 2016; 14:240–247.

11. Adult inflammatory bowel disease physician performance measures set. American Gastroenterological Association Web site. http://cinergi-ibd.com/uploads/1/0/4/9/104927151/ibd_performance_measures.pdf. Accessed March 9, 2018.

12. Melmed GY, Siegel CA, Spiegel BM, et al. Quality indicators for inflammatory bowel disease: development of process and outcome measures. Inflamm Bowel Dis. 2013; 19:662–668.

13. Standards for the healthcare of people who have inflammatory bowel disease (IBD) 2013 update. The IBD Standards Group Web site. http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf. Accessed March 9, 2018.

14. Kim AH, Roberts C, Feagan BG, et al. Developing a standard set of patient-centred outcomes for inflammatory bowel disease: an International, Cross-disciplinary Consensus. J Crohns Colitis. 2018; 12:408–418.

15. Walsh AJ. TrueColours ulcerative colitis. HRA Web site. https://www.hra.nhs.uk/. Accessed March 9, 2018.

16. Crandall W, Kappelman MD, Colletti RB, et al. ImproveCare-Now: the development of a pediatric inflammatory bowel disease improvement network. Inflamm Bowel Dis. 2011; 17:450–457.

17. IBD Qorus: quality driven. Care focused. Crohn’s & Colitis Foundation Web site. http://www.crohnscolitisfoundation.org/science-and-professionals/ibdqorus/. Accessed March 9, 2018.

18. Regueiro M, Click B, Holder D, Shrank W, McAnallen S, Szigethy E. Constructing an inflammatory bowel disease patient-centered medical home. Clin Gastroenterol Hepatol. 2017; 15:1148–1153. e4.

19. Kosinski L, Baum C, Brill J, et al. P-052 Project sonar: patient engagement reduced relative risk and cost of care in an attributed cohort of patients with Crohn’s disease. Inflamm Bowel Dis. 2017; 23:S22.

20. My medical record for inflammatory bowel disease patients. University Hospital Southampton NHS Foundation Trust Web site. https://health.org.uk/programmes/innovating-improvement/projects/my-medical-record-%E2%80%93-inflammatory-bowel-disease. Accessed March 9, 2018.

21. Walters S. NACC audit of IBD. Chichester: Aeneas Press;2000.

22. Ghosh S, Mitchell R. Impact of inflammatory bowel disease on quality of life: results of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) patient survey. J Crohns Colitis. 2007; 1:10–20.

23. Eurostat: employment and unemployment. European Commission Web site. http://ec.europa.eu/eurostat/en/web/lfs/statistics-illustrated. Updated 2014. Accessed March 9, 2018.

24. Canada employment rate. Trading Economics Web site. https://tradingeconomics.com/canada/unemployment-rate. Updated 2014. Accessed March 9, 2018.

25. Kuenzig ME, Lee SM, Eksteen B, et al. Smoking influences the need for surgery in patients with the inflammatory bowel diseases: a systematic review and meta-analysis incorporating disease duration. BMC Gastroenterol. 2016; 16:143.

26. Parkes GC, Whelan K, Lindsay JO. Smoking in inflammatory bowel disease: impact on disease course and insights into the aetiology of its effect. J Crohns Colitis. 2014; 8:717–725.

27. Ueno F, Nakayama Y, Hagiwara E, Kurimoto S, Hibi T. Impact of inflammatory bowel disease on Japanese patients’ quality of life: results of a patient questionnaire survey. J Gastroenterol. 2017; 52:555–567.

28. Lönnfors 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; 8:1281–1286.

29. Schoultz M, Macaden L, Watson AJ. Co-designing inflammatory bowel disease (IBD) services in Scotland: findings from a nationwide survey. BMC Health Serv Res. 2016; 16:231.

30. Panés J, O’Connor M, Peyrin-Biroulet L, Irving P, Petersson J, Colombel JF. Improving quality of care in inflammatory bowel disease: what changes can be made today? J Crohns Colitis. 2014; 8:919–926.

31. Hernández-Sampelayo P, Seoane M, Oltra L, et al. Contribution of nurses to the quality of care in management of inflammatory bowel disease: a synthesis of the evidence. J Crohns Colitis. 2010; 4:611–622.

32. Haapamäki J, Turunen U, Roine RP, Färkkilä MA, Arkkila PE. Finnish patients with inflammatory bowel disease have fewer symptoms and are more satisfied with their treatment than patients in the previous European survey. Scand J Gastroenterol. 2008; 43:821–830.

33. Kim YS, Jung SA, Lee KM, et al. Impact of inflammatory bowel disease on daily life: an online survey by the Korean Association for the Study of Intestinal Diseases. Intest Res. 2017; 15:338–344.

34. Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel: diagnostics guidance [DG11]. National Institute for Health and Care Excellence (NICE) Web site. https://www.nice.org.uk/guidance/dg11. Updated 2013. Accessed March 9, 2018.

35. Walker GJ, Moore L, Heerasing N, et al. PTH-092 Clinical validity and utility of faecal calprotectin in primary care. Gut. 2017; 66:A252.