GPs being left out of patients’ IBD treatment

Despite finding a multidisciplinary approach is best practice for treating inflammatory bowel disease (IBD), GPs are not being adequately informed about their young patients’ treatment and results.
 
That is according to the new IBD Paediatric Quality of Care Hospital Audit which surveyed eight hospitals and examined 186 admissions for IBD patients.
 
It aimed to provide an in-depth assessment of the patient experience and quality of care for patients under 18 years old living with IBD, including Crohn’s disease and ulcerative colitis.
 
The audit went on to make four recommendations for change: improving mental health support, increasing support for the multidisciplinary team, streamlining access to newer medications, and improving the pre-diagnosis experience.
 
It found that 36.4% of surveyed youth do not believe their GP is adequately informed by their specialist or hospital regarding results and treatment.
 
It also revealed that instruction to GPs about the need for annual review, such as colorectal cancer surveillance, renal function and bone densitometry, are rarely passed on after hospitalisation, occurring in just 12% of cases.
 
Crohn’s and Colitis Australia Chief Executive, Associate Professor Leanne Raven, said GPs can be key to patients receiving quicker diagnoses and greater knowledge about their condition, and should not be kept in the dark.
 
‘GPs play a really prominent role in this care, particularly in terms of kickstarting diagnoses … it makes a huge difference to these kids,’ she told newsGP.
 
‘Now that we have tests like faecal calprotectin, which can differentiate between irritable bowel syndrome and conditions like IBD, we’re hoping that GPs will be using that more when people present with symptoms.’
 
‘The best thing for a GP to do, once a patient is diagnosed, is to make sure they’re getting that multidisciplinary support, to communicate well with the other specialists, and for that communication to go both ways so everyone’s on the same track.’
 
Paediatric gastroenterologist and the audit’s Chair, Associate Professor Ed Giles, said GPs should feel confident to reassure and advocate for their patients, saying they play a critical role in making a diagnosis or thinking of the diagnosis.
 
‘The GP becomes even more important for care coordination and sometimes recognising that their IBD patient isn’t getting the best holistic care,’ he told newsGP.
 
‘Our patients can come with great psychological scars, and it’s really important they feel like they are being looked after by a team of people that supports them in every way.
 
‘Often, we can be very focused on their medicines and if their disease is under control, which is clearly very important, but seeing that in context with a family and with everything else that might be going on in their lives is very important.’
 
The audit also revealed a significant mental health impact on young IBD patients.
 
It found that 61.5% of 16 and 17-year-olds were at a high risk of anxiety and mood disorder, as were 48.8% of parents and carers of children with IBD. 
 
Around 39% of youth with IBD had been hospitalised for overnight care and more than three quarters of these admissions were unplanned or an emergency.
 
Currently in Australia, experts believe IBD is becoming ‘more prevalent, more complex, and more severe‘.
 
The disease is estimated to impact around one in 250 people aged 5–40, with almost 75,000 Australians having Crohn’s disease or ulcerative colitis.
 
With this number on the rise, Associate Professor Giles said GPs must remember that while the condition is not common in children, it can happen.
 
‘The biggest finding from the report was the psychological burden of having that chronic disease label, particularly one that has rather difficult, somewhat embarrassing symptoms for teenagers in particular to deal with,’ he said.
 
‘Often some of the trauma that comes to patients is because of delayed diagnosis, and that’s really challenging because of the non-specific nature of the symptoms.
 
‘And generally, it’s harder for remote and regional patients, and for the remote and regional GPs, and that’s something else that came up in the report.’
 
Associate Professor Raven said a dedicated multidisciplinary care team can have a life-changing impact on these patients and their future.
 
‘Kids are developing so much and learning so much, their development can be delayed if they have lots of hospital admissions, or if they can’t participate in school, or get a part-time job,’ she said.
 
‘We’d really love everyone to feel, “Okay, I know what to do when I get these symptoms or when this starts to go wrong, I know what my next step is”.
 
‘And that means having health professionals working with their patients to develop these plans so that they can go away feeling good and with treatments that work for them.’
 
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Crohn’s disease IBD inflammatory bowel disease ulcerative colitis