CCA launches new research into Quality of Care for kids with IBD
30 May 2024 – Crohn’s and Colitis Australia (CCA) has launched the results of the Inflammatory Bowel Disease (IBD) Paediatric Quality of Care Hospital Audit 2023, undertaken with support from the Federal Government.
The report was launched at a Parliamentary Friends of Auto Immune Diseases event Chaired by Jenny Ware MP, Federal Member for Hughes and fellow Co-Chairs Dr Gordon Reid, Member for Robertson and Dr Sophie Scamps, Member for Mackellar, alongside sector leaders, people living with IBD and Directors and staff of CCA.
Some of the key findings include:
The process of diagnosis is harder than it should be
The lead-up to diagnosis for a young person is often described as “long”, “frustrating”, and an emotionally draining “fight” with healthcare providers for action.
Increased mental health risk
Young people with IBD have more than a 50% risk of developing mood or anxiety disorder. Despite this, none of hospitals audited had an on-site psychologist as part of their IBD treatment team.
Lack of access to medication
IBD medications listed on the Pharmaceutical Benefits Scheme are limited for youth, compared with adults.
Lack of access to healthcare professionals
Most youth living with IBD don’t have access to a multidisciplinary team: only 23% of Crohn’s Disease inpatients were seen by a IBD nurse, compared with 33% in 2014.
While funding announced in the federal budget for GutSmart – a CCA initiative that delivers online training courses for GPs and health professionals on the topic of IBD – will go some way toward addressing some of these issues, CCA is calling for more funding and IBD research investment towards #savingkidsguts and avoiding unnecessary surgeries through earlier diagnosis and access to broader treatment options.
Associate Professor Ed Giles, Head of IBD Paediatric Quality of Care Project Advisory Committee who led the audit, spoke about the impacts he sees on the young people he treats.
“In my practice, three of my paediatric patients were given access to off label medication, which ultimately, was the only reason they kept their colon. Giving young people access to the same medications that adults have, would prevent so many kids from going on to live a life full of medical complications,” says Associate Professor Giles.
He also says that the mental health of young people with IBD is a great concern that the healthcare system needs to address.
“There needs to be more emphasis placed on the role that IBD nurses play and the level of psychological support needed. Over half the young people in this survey exhibited clinical levels of distress. IBD is a lifelong condition which means we need to provide long term mental health support, especially for young patients who are already at a psychologically vulnerable time of their life.
“One young patient I treated was in year 12. By the end of the school year, we had treated him, and he was physically well but all of his friends went on to university whereas he didn’t leave the house for two years,” says Associate Professor Giles.
MP Jenny Ware lives with Crohn’s disease and said that she has always been reluctant to talk about her experiences but with young people in room brave enough to speak, then she needed to speak about her experiences.
“I was diagnosed with Crohn’s disease in 2001. Since that time, I’ve had multiple surgeries, multiple admissions to hospitals and taken various treatments. In 2010, after a major surgery I had a colostomy bag for several years. At the time, I was very sick, I had young children and was working as a lawyer. However, I was an adult. I can’t imagine how it would have been if I was a child or teenager going through that trauma or if I was a parent whose child was going through this,” she told the gathering.
Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands and provides support programs for children and young people. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.