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.
Associate Professor in Health Psychology, Dr Antonina Mikocka-Walus, who has lived with IBD since the age of 17 and is the lead researcher on this study says, "Over 20 years ago, when I was diagnosed with IBD, I remember being hospitalised and never meeting another young person with this disease. I thought then that it was a disease of old age 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 ability to travel," 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 $3.16 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 for patients across Australia including CCA members and the wider IBD community to have a say about their experience of IBD care.
The 2018 Patience Experience Research Report is available online at https://www.crohnsandcolitis.com.au/ibdqoc/patient-experience-survey/
(Available after 28 Nov 6am)
