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. 2018 Oct;16(4):537-545.
doi: 10.5217/ir.2018.00041. Epub 2018 Oct 10.

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

Peter Irving  1 , Johan Burisch  2 , Richard Driscoll  3 , Mats Olsson  4 , John R Fullarton  5 , Barry S Rodgers-Gray  5 , Simon Pl Travis  6
Affiliations

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

Peter Irving et al. Intest Res. 2018 Oct.

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.

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

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Conflict of interest statement

CONFLICT OF INTEREST

No potential conflict of interest relevant to this article was reported.

Figures

Fig. 1.
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.
Fig. 2.
Primary healthcare provider for respondents.
Fig. 3.
Fig. 3.
Important topics in IBD discussed by healthcare provider and respondent within 3 months of diagnosis.
Fig. 4.
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.
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).
See this image and copyright information in PMC

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