Achieving and maintaining quality of care in inflammatory bowel disease: The Crohn's and Colitis Australia audit.

Abstract

Crohn's and Colitis Australia (CCA) provide support programs, education, research funding, and advocacy for the health and well-being of over 75 000 Australians living with inflammatory bowel disease (IBD). IBD is common, costly, ranking among the most expensive diseases and has a severe impact on the lives of mostly young people with associated indirect costs. There is no cure for IBD, and best practice guidelines are often not followed. Crohn's and Colitis Australia have recently commenced a Quality of Care audit with just over 80 hospitals across Australia enrolling. The first step in developing the audit was to define quality of care, but because IBD is not defined as one disease, quality of care in IBD needs to be adaptive, effective, and personalized. The STEEEP acronym defines quality of care as Safe, Timely, Effective, Efficient, Equitable and Patient-centered. While standards of care focus on clinical guidelines, position statements, clinical trials, and meta-analysis leading to evidence-based practice, quality of care involves assessing patient outcomes and measurable improvements to enhance the actual delivery of care. Measuring quality of care requires examination of the degree of consistency in care, understanding variation in the care received by patients, and how evidence-based practice translates into actual clinical pathways. A US survey of quality of care found that there is significant geographic variation in IBD-related biologic and hospital utilization.1 IBD2020 is a global forum for professionals and patients where they can discuss how best to improve the quality of care for patients with IBD.2 The forum involves 55 participants, 18 countries, and 15 representatives from national IBD patient organizations. Their aim is to share aspirations, describe different initiatives, learn from each other, and seek common ground. IBD2020 conducted a survey with 5000 IBD patients from six countries to capture patients' perspectives on quality of care. The survey found that around 20% had experienced continuous flare-ups for 12 months, more than a third had been absent from work for more than 5 days due to IBD, and around 30% had an emergency admission. While patients were often satisfied with the overall quality of IBD care, 25% of patients had waited more than 1 year for diagnosis; less than half of patients received basic information about their diagnosis; less than 25% of patients had discussed the aims of care and for many a lack of access to multidisciplinary teams including dietitians and psychologists. CCA have developed Interim Australian IBD Standards; received funding from federal government, pharmaceutical companies, and CCA members; and these have been endorsed by peak multidisciplinary learned bodies. The CCA quality of care audit aims to examine the provision and organization of IBD care to provide an evidence-based case for increased IBD resources consistent with national needs. The audit is supported by the key stakeholder groups and aligns with government policy objectives. The CCA audit draws on experience from the UK IBD audit in 2014 and uses the Donabedian framework, which uses process, structural, and outcome measures. The organizational audit closed on 15 February 2016; however, the clinical audit started on 22 February 2016 and is currently ongoing. The CCA audit results are expected to be available in the third quarter of 2016. These will enable local and national advocacy to improve the resources, health professionals, and capacity for the delivery of high quality IBD care for all Australians.