Crohn's and Colitis Australia Inflammatory Bowel Disease Audit: Identifying disaster in waiting

Abstract

Inflammatory bowel disease (IBD) is a complex group of chronic health disorders with significant morbidity, and available therapies can have significant toxicity. Across Australia, the delivery of IBD care is highly variable and often delivered in a reactive and fragmented fashion. Developing IBD standards of care and treatment guidelines is relatively easy; however, measuring the quality of care delivered and actual health care outcomes is extremely difficult. A validated proxy for the measurement of quality of care is the identification of variability in care. The measurable components of quality of care are the structure in which care is delivered, the processes followed within that structure, and the patient's health outcome. 1 Crohn's and Colitis Australia, the peak patient representative body in Australia, has coordinated a multipartite quality of care program involving peak clinical representative bodies who receive government and industry funding. This program led to the development of the Australian IBD Standards in 2016, 2 an organizational survey of IBD care delivery structures and the first Australian IBD Audit. This audit captured hospital admissions over a 12-month period from 2012-2013. 3 A limitation of the first IBD Audit was inviting only public hospitals to participate thereby excluding a large number of private patients receiving care in either primary care or private specialist environments. Of the 138 hospitals invited to participate, 51% (71 facilities) provided data for the organizational audit. 3 A second limitation of the audit was that it was skewed towards larger centers that already had established IBD units. This may have resulted in a more positive estimation of the care being delivered in Australia. Given the make-up of participating institutions, results may have disproportionately captured a higher number of patients with more severe disease, requiring hospital-based care. Despite this, an estimated 27% of national admissions for IBD were captured, and the results of the audit identified a number of significant systemic failings.According to the IBD Standards of Multidisciplinary Care, only 1% of participating sites had the appropriate multidisciplinary team in place. A basic IBD service should have a dedicated IBD nurse (employed on a 0.4 effective fulltime basis), an IBD telephone helpline, and a named clinical lead. Only 24% of sites met these minimum criteria. 3 Only 39% of sites had any form of IBD nurse, and only 38% had a multidisciplinary team that included a gastroenterologist, a colorectal surgeon, a dietitian, and a stomal therapist. In relation to treatment protocols, only one quarter of sites had a protocol for the management of acute severe ulcerative colitis. 3 These disparities highlight large gaps in clinical infrastructure and delivery of care in IBD from a sample which is most likely to have established IBD centers. This audit confirmed the results of a previous study which identified that the funding for IBD nurses is ad-hoc and insecure, and is often obtained...

Transitional care of adolescents with inflammatory bowel disease to adult services varies widely across Australia and New Zealand

“…Interestingly, multi‐disciplinary team (MDT) support with a particular focus on IBD nurses is also shown to facilitate adherence to IBD guidelines 31,37 . In the previously discussed audit (CCA IBD audit 2016), 1% of centres caring for people with IBD had a full MDT available, and approximately 31% had an IBD Nurse that had ongoing secure funding 29,38,39 . The benefits of the MDT to the care of children, adolescents, and adults with IBD are known to be multifactorial.…”

“… 31 , 37 In the previously discussed audit (CCA IBD audit 2016), 1% of centres caring for people with IBD had a full MDT available, and approximately 31% had an IBD Nurse that had ongoing secure funding. 29 , 38 , 39 The benefits of the MDT to the care of children, adolescents, and adults with IBD are known to be multifactorial. MDT care is preferred by patients and represents a key pillar in the holistic assessment and management of the biopsychosocial consequences that manifest as a result of the condition.…”