Research reveals that young people with IBD aren’t receiving the care they need.
Australia, 1 May 2024 – Research has highlighted gaps in the paediatric healthcare system for young people living with Inflammatory Bowel Diseases (IBD). This is why the focus of this year’s Crohn’s and Colitis Awareness Month- which is May – is the impact of IBD on young people.
The results from the Inflammatory Bowel Disease Paediatric Quality of Care Patient Experience Survey 2023 highlighted concerning issues in a number of areas but most concerningly, mental health, delay in diagnosis and treatment access:
- Mental Health: IBD can impose a profound psychological burden on young people
Young people with IBD have more than a 50% risk of developing mood or anxiety disorder. Despite this, the survey results identify access to mental health support as being problematic.
Over half the young people surveyed, reported no query about their mental health from any health professional in the past year (62.4%); and less than a third that accessed mental health support felt it was easy to do so (29.7%). Additionally, accessible mental health support was the most common suggestion for improved IBD care.
- Delay in diagnosis and access to prompt advice, specialist review, and procedures
Waiting times for specialist review of a suspected disease relapse surpassed the national standard of five days for around half of respondents (49.8%), often exceeding two weeks (26.8%).
People often sought private services such as radiology and colonoscopy/surgery services to avoid treatment delay (85.1% and 79.3%). Uncertainty or an outright lack of access to prompt advice via an email or phone helpline was common (23.7%).
- Care is not being tailored to the needs of young people
More than a third of young people (38.3%) aren’t being referred to a paediatric gastroenterologist upon first suspicion of IBD. The results also showed that information and educational opportunities are more often afforded to ang geared towards adults rather than youth.
Associate Professor Ed Giles, Chair, IBD Paediatric Quality of Care Project Advisory Committee, says there are issues that need to be addressed within the healthcare system when it comes to the quality of care that young people with IBD are receiving.
“While it’s encouraging to see improvements in some areas of care for young people who are either in the process of being diagnosed with IBD or who have already been diagnosed, it’s also concerning to see a regression in other areas.”
“We’re seeing gaps in healthcare infrastructure when it comes to dealing with the psychological impact that IBD can have on young people as well as increased barriers when it comes to accessing services, getting educated and being able to receive a diagnosis. The report also shows that young people in rural and regional areas are more likely to be impacted by these gaps in the system.
“If we take action on the information provided in these reports, we can make a real impact on the lives of young people living with IBD,” Associate Professor Giles said.
CCA recently interviewed Aiyahna, a young person with IBD and Sarah, the mum of a four year old boy who was diagnosed with IBD at the age of three. Their stories reflect the reality of what the latest research tells us.
Aiyahna spoke about the mental resilience required when living with IBD.
“Living with Crohn’s can feel like riding a rollercoaster at times. Starting with a huge uphill climb as our bodies recover, followed by enormous drops as we realise that our lives have to change, moments when we feel like we are flying upwards as we regain momentum in life and then those moments of coasting as we adjust to our new normal. However, I have found that around every corner there is a lesson learned and a strength found,” Aiyahna said.
Sarah is a paediatric nurse who lives with her family in rural Victoria and was told by one doctor that he would “eat his shoe” if her son had IBD. She spoke about the difficulties and the delay in receiving a diagnosis for her son and the scepticism she faced from doctors.
“Keep advocating for your kids and keep pushing for answers because there are crucial factors in these things that may not be easily visible to a doctor in an examination room or in a set of test results. As a parent, you have an intuition about your kids and their health,” Sarah said.
To read more about Aiyahna’s and Sarah and Chris’s stories, you can visit: News – Crohn’s & Colitis Australia (CCA) (crohnsandcolitis.org.au)
CCA acknowledges and thanks our generous sponsors, Pfizer, Johnson & Johnson, Dr Falk Pharma, Celltrion, Takeda and AbbVie.
For media enquiries contact Tiarna Adams 0478 074 288 or [email protected].
ABOUT CROHN’S & COLITIS AUSTRALIA
Crohn’s & Colitis Australia (CCA) has been working with people living with Crohn’s disease and ulcerative colitis, healthcare professionals, governments and the public to minimise the impact that these conditions have on the community since 1985. In that time, CCA has been the only Australian organisation working with and for patients and their families, the doctors that treat them, and the policymakers who can bring about change. CCA provides high quality information, supports life-changing research and campaigns vigorously – for more knowledge, better services and more support for people affected by inflammatory bowel disease. For more information, visit: https://www.crohnsandcolitis.org.au/