New research gives voice to IBD patients, identifies major gaps in healthcare

More and more young people are being diagnosed with inflammatory bowel disease (IBD) and lack access to multi-disciplinary IBD care, reveals the first-ever IBD patient experience research.

Crohn’s & Colitis Australia (CCA) have released research findings from a national patient experience survey of IBD care. The 2018 Patience Experience Research Report demonstrates there is a high burden of Crohn’s disease and ulcerative colitis – the two main forms of IBD – in Australia.  The patients are commonly young, unwell with active disease and had lived with the condition for more than a decade.

Antonina Mikocka-Walus, who has lived with IBD since the age of <…> says, “I remember being hospitalised and never meeting another young person with IBD. I thought then that it was a disease of adulthood rather than childhood, and I was particularly unlucky. I had my whole life ahead to spend with IBD, and deal with pressures of young adulthood.”

Most people living with IBD have access to a gastroenterologist, but many lack important chronic disease management support.

“On the outside, I may look like I have everything together, but the reality is that my IBD has affected all aspects of my life, my relationship with family, my mental health, my social interactions, my employability,” she adds.

CCA is driving improvements in quality of medical care and services for Australians living with IBD. Associate Professor Leanne Raven, CEO of CCA, says, “We take great pride in the opportunity and responsibility to positively influence patient’s IBD care. Understanding how patients experience medical care will help healthcare providers identify areas for improvement that are costing the healthcare systems already under financial burden.”

 

The total cost of caring for Australians with IBD is estimated at $3.1 billion each year, and that cost is expected to rise as the impact of the disease becomes more understood. This report provides national data to governments, planners, hospitals and clinicians to work with people living with IBD in improving their experience with IBD care.

 

This online research survey provided an opportunity to CCA members, and the wider IBD community comprising online forums and hospital and other medical clinics to have their say about their experience of IBD care. The 2018 Patient Experience Research Report is available online at https://www.crohnsandcolitis.com.au/ibdqoc/

 

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For media enquiries and to arrange interviews, please contact:

Sona Babbar

Communications Manager
Crohn’s & Colitis Australia

sonakshi@crohnsandcolitis.com.au

T: 61 3 9815 1266      M: 0437852039

About IBD Quality of Care Program
To explore the quality of care for people with IBD CCA undertook an audit of 71 hospitals in 2016. It identified that generally care didn’t meet the national standards for this chronically unwell group and that mental health issues were prevalent and service access limited. This study sought to measure the quality of care through the patient experience to provide evidence for co-created improvement in care.  The 2018 Patience Experience Research Report was made possible through the support of the Australian Government Department of Health and unrestricted educational grants from Janssen (Janssen-Cilag Pty Ltd) and Ferring Pharmaceuticals.

About Crohn’s & Colitis Australia
Crohn’s & Colitis Australia (CCA) is a not-for-profit company governed by a board of directors who represent the IBD community. For more than 30 years, Crohn’s & Colitis Australia (formerly the Australian Crohn’s and Colitis Association) has been making life more liveable for over 85,000 Australian men, women and children living with inflammatory bowel disease (IBD). CCA provides confidential support programs, educates and increases public awareness of these debilitation conditions and works to raise much needed funds for support and research into a cure. For more information visit the website: www.crohnsandcolitis.com.au

About IBD:

  • IBD is a chronic and largely hidden disease affecting approximately 1 in 250 people aged 5 – 49 nationally.
  • Australia has one of the highest rates of prevalence and incidence in the world and each year more and more young people are being diagnosed.
  • Over 85,000 Australians have Crohn’s disease or ulcerative colitis (collectively known as Inflammatory Bowel Disease), and more than 5 million worldwide have the disease.
  • The number of Australians with IBD is expected to rise dramatically within the next ten years with numbers set to rise to 100,000.
  • Crohn’s disease is incurable and is associated with a 47% increase in the mortality risk.
  • Ulcerative colitis is only ‘curable’ through radical surgery and if untreated may also lead to death.
  • Typical symptoms include frequent and urgent need to use the toilet, diarrhoea, bleeding, loss of appetite, fatigue and weight loss.
  • IBD costs Australia $3.1 billion each year in hospital costs, productivity losses and financial and economic costs.
  • Not much is known about IBD in the general public and sufferers are burdened with a hidden struggle that affects their personal, social and work life.
  • IBD care is inconsistent and inadequate, particularly in regional areas.
  • Although there is not yet a cure, early diagnosis and treatment can greatly improve the lives of those with IBD as well as reduce the need for surgery and hospitalisations.