1. Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards.
- Author
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Mikocka-Walus A, Massuger W, Knowles SR, Moore GT, Buckton S, Connell W, Pavli P, Raven L, and Andrews JM
- Subjects
- Adolescent, Australia epidemiology, Cross-Sectional Studies, Female, Health Services, Humans, Male, Middle Aged, Reference Standards, Colitis, Inflammatory Bowel Diseases diagnosis, Inflammatory Bowel Diseases epidemiology, Inflammatory Bowel Diseases therapy
- Abstract
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., (© 2019 Royal Australasian College of Physicians.)
- Published
- 2020
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