Patient experience of the quality of care for people with inflammatory bowel disease in Australia: A national survey
Bibliographic record
Abstract
Background and Aim: Crohn's disease and ulcerative colitis affect 85 000 Australians. In 2016, Crohn's & Colitis Australia conducted a national audit of the quality of care, as measured by clinician and hospital data, which found that, in many cases, care fell short of the Australian Inflammatory Bowel Disease (IBD) Standards. Patient‐centered care and consumer co‐creation in health have been shown to improve the safety and quality of health care and necessarily require the engagement of consumers in their care and health care planning.1,2 This study aimed to assess the experience of health care for people living with IBD against the Australian IBD Standards; describe the need for, attitudes toward, and access to psychological services for people with IBD; and compare the patient experience of health care for people in different service environments.\nMethods: An online cross‐sectional survey was conducted with Australians aged 16 years or older recruited via the Crohn's & Colitis Australia membership, public and private clinics, and the Royal Flying Doctor Service. Participants completed a questionnaire incorporating newly designed questions addressing the Australian IBD Standards 2016, the Picker Patient Experience Questionnaire, IBD Control Survey, Manitoba Index, and the Kessler Psychological Distress Scale (K10). The chi‐squared test was used to compare those with and without distress, and people in different service environments, on key variables.\nResults: Complete data were provided by 731 respondents (71.5% female; median age, 46 years; range, 16–84 years). Participants reported living with IBD for a mean of 14.2 years, and more than a quarter (26.8%) had been admitted to hospital in the previous year. Most (57%) were managed by a private specialist over the previous year. Although the majority (74.8%) were satisfied with their IBD health care, the care reported did not meet the Australian IBD Standards. Only 32.4% had access to IBD nurses, 30.9% to a dietitian, 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%). A third of respondents reported waiting > 14 days to see a specialist when their IBD flared. Overall, 50% of respondents reported distress. Only 15.2% of respondents were currently seeing a mental health practitioner. Those with psychological distress were significantly less satisfied with their IBD care; were more commonly hospitalized; had an active disease, fistula or perianal disease, pain, or fatigue; and were receiving steroids, opioids, or antidepressants (all P < 0.05). As many as 68.2% of those with severe distress were not seeing a mental health practitioner. Participants received enough information, mostly from medical specialists (88.8%) and IBD nurses (79.4%). However, 51% wanted to be more involved in their health care.\nConclusion: These data highlight the need to improve awareness so that individuals and their caring team can address and improve all aspects of their quality of care. Better identification and service access is required and wanted by people experiencing psychological distress.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".