CCFA's Quality of Care Initiative

Needs in IBD Patient Care

Our understanding of risk and benefit trade-offs in the treatment of IBD continues to evolve, making the absolute standardization of care difficult. However, despite these "grey" areas, there are many realms of IBD care that can be subject to standardization, such as colon cancer surveillance in patients with chronic colitis, minimization of steroid use, monitoring of bone health, and prophylactic immunization of immunosuppressed patients against vaccine-preventable infections.

Breakthroughs over the past decade have illuminated new medications and treatment paradigms to improve the inflammatory burden associated with IBD. There is a lack of projects, however, showing how care should be delivered to patients. Studies have shown that not all healthcare practitioners provide the same level of care for patients with IBD, and that there is a high degree of variation in how physicians diagnose and treat ulcerative colitis and Crohn's disease. This suggests poor quality of care, as variation suggests possible overuse, underuse, or misuse of resources, directly impacting the health and treatment outcomes for IBD patients. Moreover, it is estimated that 11 percent of patients receive care that is not recommended and potentially harmful.

Goals of CCFA Quality of Care

While different systems of measuring quality of care exist, the type best suited for a chronic illness like IBD is agreed to be "process measures," which directly assess the various processes of delivering care. A set of rigorously defined, evidence-based quality process measures (or quality indicators) for IBD allows for a standardized and reproducible measurement of the quality of care for patients with IBD.

CCFA's Quality of Care program aims to improve the quality of care delivered to IBD patients by defining the standards of care for IBD; developing an implementation program to measure and deliver this care; continuously evaluating and refining this process and; measuring and improving the impact on patient outcomes. As the only national organization dedicated to providing IBD education and support services for professional and patient communities, CCFA is in the best position to garner the participation of world-renowned experts in IBD, ensure scientific rigor, and lend objectivity and credibility to the results.

Pilot Project: Quality of Care Program

After systematic and comprehensive rounds of literature reviews and ratings by multi-disciplinary advisory panels of IBD experts, the CCFA Quality of Care committee developed a set of process and outcome quality indicators for CD and UC using standardized, validated methodology. These quality indicators have been rolled out to six selected academic and private practices as part of CCFA's pilot project, the Quality of Care program.

In the Design and Development phase (June-Dec 2013), a major focus has been on understanding the feasibility of the implementation of the system devised based on the quality indicators. The goal is to study the system in different practice settings, specifically in the context of care for adults. The Pilot Testing phase (Jan-June 2014) includes a limited test of the design, tools, and training. Sites participating in the initial training conduct small scale testing of the changes in care.

The pilot project has already been incredibly robust. Through monthly joint conference calls, the six selected practices report on their performance and share best practices and ideas. By June 30, 2014 participating sites will identify a sub-population of eligible adult patients with IBD in their practice and aim to enroll at least 80% of this group. Achieving a complete documentation bundle in at least 80% of the visits and reporting back on the participants' experience will be part of the pilot.

A key next step in this program is our invitation-only IBD 2020 USA meeting, to be held in mid-May 2014. Meeting outcomes will be shared with the IBD community this summer.