Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards

Antonina Mikocka-Walus, Wayne Massuger, Simon R. Knowles, Gregory T. Moore, Stephanie Buckton, William Connell, Paul Pavli, Leanne Raven, Jane M. Andrews

Research output: Contribution to journalArticleResearchpeer-review

2 Citations (Scopus)


Background: Quality of care in inflammatory bowel disease (IBD) has received much attention internationally; however, the available surveys focus on health professionals rather than patients. Aims: To assess the experiences of healthcare for people living with IBD against established Australian IBD Standards. Methods: An online cross-sectional survey was conducted with Australians ≥16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics and the Royal Flying Doctor Service. Participants completed a questionnaire incorporating items addressing the Australian IBD Standards 2016, the Picker Patient Experience Questionnaire, IBD Control Survey and the Manitoba Index. Results: Complete data were provided by 731 respondents (71.5% female, median age 46 years, ranging from 16 to 84 years). While the majority (74.8%) were satisfied with their IBD healthcare, the care reported did not meet the Australian IBD Standards. Overall, 32.4% had access to IBD nurses, 30.9% to a dietician and 12% to a psychologist in their treating team. Participants managed by public IBD clinics were most likely to have access to an IBD nurse (83.7%), helpline (80.7%) and research trials (37%). One third of respondents reported waiting >14 days to see a specialist when their IBD flared. Participants received enough information, mostly from medical specialists (88.8%) and IBD nurses (79.4%). However, 51% wanted to be more involved in their healthcare. Conclusions: These data show discordance between expectations of patients and national standards with current levels of service provision, which fail to deliver equitable and comprehensive IBD care.

Original languageEnglish
Pages (from-to)1216-1225
Number of pages10
JournalInternal Medicine Journal
Issue number10
Publication statusPublished - Oct 2020


  • inflammatory bowel disease
  • inflammatory bowel disease standards
  • multidisciplinary care
  • quality of care
  • survey

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