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Helping Ulcerative Colitis (UC) Patients and Physicians Learn Together

March 24, 2013

Facing one of the highest Ulcerative Colitis (UC) rates in the world, Australian health officials have taken a number of steps toward creating evidence-based treatment guidelines that can more effectively help patients through this difficult condition.

And yet, says Rebecca Agnew from Shire Australia, a number of issues remain:

  • The initial diagnosis of the condition, for example, is often delayed— especially in remote areas, where access to gastroenterologists is limited.
  • Treatment non-adherence is high, leading to numerous unnecessary disease flares.
  • Similarities in some symptoms can make it difficult to differentiate between UC and irritable bowel syndrome, resulting in inappropriate referrals to specialist doctors.
  • Patients who seek to proactively manage their own health remain under-informed.

“It’s a set of circumstances that can lead to poor outcomes for patients and a growing frustration amongst the medical community in Inflammatory Bowel Disease,” says Pip Paterson, Senior Product Manager at Shire.

Shire Australia worked collaboratively with a Steering Committee of five leading Australian Gastroenterologists to both identify the problems and to help address them. The result of that collaboration was a 45-person multidisciplinary working party that met in Sydney in March 2014 with the objective to try to “improve outcomes for patients with mild-moderate UC by building an interactive forum in which innovation and best practices can be shared, debated, and created.”

The working party was comprised of: 

  • Inflammatory Bowel Disease (IBD) specialists
  • gastroenterologists
  • IBD nurses
  • general practitioners (GPs) across both rural and metropolitan areas
  • psychologists
  • pharmacists
  • dieticians
  • and representatives from Australia’s IBD health consumer group, Crohn’s and Colitis Australia.

Says Paterson: “Their commitment to helping patients achieve success in choosing the right treatment paths, adhering to proper treatment, living beyond inflammation, and managing the disease over the long term was inspirational.”

The result of the meeting was the creation of three mild-moderate UC Management Tools; two Guides for Primary Care Physicians; and a Patient Management Plan.

  • The tools produced by the committee are designed to help both general practitioners and patients learn about the disease in a peer-approved, easily accessible manner.
  • GPs benefit from the insight of specialists’ guidance on appropriate treatment and referral.
  • Patients benefit from tools that allow them to track symptoms and also to learn about the ways in which the disease is impacting their lives. 

It is, in other words, a true win-win.

Having been recently presented at Australia’s premiere Gastroenterology meeting, the Australian Gastroenterology Week, the tools are currently being piloted in clinical practice. Following the pilot, the tools will be launched in May 2014, in partnership between Shire and the Steering Committee members.