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

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.

Psychological distress is highly prevalent in inflammatory bowel disease: A survey of psychological needs and attitudes

“…Full demographics and clinical characteristics are presented elsewhere. 17 Psychological care in IBD (Australian IBD Standard A13) Level of distress. The mean level of distress for these respondents (K10 = 20.9) was within the mild distress category (20)(21)(22)(23)(24), while 51% of respondents reported good mental health (K10 score < 20), and 15% reported severe distress (K10 score ≥ 30) ( Table 1).…”

“…The present study is the largest survey of mental health needs, attitudes, and access to mental health services in people living with IBD in Australia. 17 There is an important gap in mental health services for IBD patients in Australia: Only 12% of respondents had access to psychologists, while nearly 50% of respondents reported significant psychological distress. A previous Australian study 14 using the same measure of distress (K10) (n = 336) documented clinically significant levels in 52% of respondents.…”

“…[30][31][32][33] Therefore, our findings demonstrate that high rates of distress are likely to contribute to the burden of IBD at the personal and societal levels and translate into large costs of IBD care in Australia. 1 The limitations of this survey have been previously discussed 17 and include the following: its online nature, which precluded an objective assessment of IBD status and disease activity; a female-predominant sample of people aged 16 years and older excluded the pediatric population and limited the generalizability of its findings; and a low participation rate from people in remote areas.…”

“…12 The full methods are presented elsewhere. 17 Participants. People diagnosed with Crohn's disease, ulcerative colitis, or indeterminate colitis (self-reported) who were aged 16 years or older were recruited via Crohn's & Colitis Australia membership, public and private medical clinics throughout Australia, and the Royal Flying Doctor Service.…”

“…This study focused on comparing patient experience of health services with the Australian IBD Standards 2016 . The full methods are presented elsewhere …”