In 2018, Crohn’s & Colitis Australia (CCA) undertook a comprehensive review of the patient experience of care in inflammatory bowel disease (IBD).¹ Psychological wellbeing emerged as an area of high unmet need for patients – a finding which was echoed in a survey of Australian healthcare professionals at Australian Gastroenterology Week (AGW) in 2019.² In response,  CCA, in partnership with Janssen, launched a series of resources during Mental Health Week 2019 for people living with IBD and healthcare professionals to work hand in hand to address psychological well being. To discuss the ongoing ‘Hand in Hand’ campaign, the limbic spoke with Professor Rupert Leong, Consultant Gastroenterologist and Professor of Medicine at the University of Sydney, University of New South Wales and Macquarie University and Associate Professor Leanne Raven, Chief Executive Officer of CCA.

Psychological wellbeing is the elephant in the room

In 2018, “What we found when we did the IBD patient experience research gave us a bit of a reality check. Around half of the patients surveyed were psychologically distressed at the time of taking the survey. While only 1 in 10 patients reported access to a mental health practitioner, nearly 6 out of 10 considered access to a mental health expert an important part of managing their IBD,”¹  noted A/Prof. Raven.

This finding was unsurprising for Prof. Leong. “What we know is that stress makes inflammation worse. Research into the brain/gut axis shows us that when stressed, the hypothalamic pituitary adrenal (HPA) axis is activated, which leads to sustained cortisol activity.³ Not only does this have a pro-inflammatory effect, but  there’s an associated intestinal barrier dysfunction,”³ said Prof. Leong. “It’s a vicious cycle if left to run its course uninterrupted.”

Prof. Leong explained IBD itself “is a condition where stress is inherent. The added challenge is  the embarrassment of symptoms can make patients less likely to deal with psychological issues. The stigma, guilt and feeling like their doctor is too busy to deal with their psychological wellbeing can compound the challenge even further.”^3,4

Australian gastroenterologists said they want to help by having conversations

“In our patient survey, 6 out of 10 did not find it easy to discuss their psychological wellbeing with a gastroenterologist or IBD nurse,”¹ explained A/Prof. Raven. “So, we asked gastroenterologists and more than 6 out of 10 admitted they did not routinely ask patients about their psychological health and wellbeing during consultations, primarily due to time constraints (51%), inadequate training (47%) or believing other healthcare professionals were better placed to play that role (28%).”²

Hand in Hand offers support for patients and healthcare professionals

CCA in partnership with Janssen have developed a suite of education resources to simplify and embed the process of talking about psychological health and wellbeing in the clinic. “We want the entire IBD healthcare community to appreciate the latest scientific evidence linking the gut and brain as well as feel confident in normalising conversations about psychological wellbeing with patients. This way we’ll be [able] to make this just another normal part of caring for IBD patients,” noted A/Prof. Raven.

Hand in Hand resources for healthcare professionals include:

• Patient story videos, to showcase the real impact poor wellbeing has on a person living with IBD
• A mock consultation video, to demonstrate what a good conversation about mental health looks like
• Referral Pad, including the K10 psychological wellbeing checklist for patients to fill out in their own time and take to appointments to help initiate a conversation about psychological wellbeing during consultations
• Desk Guide for healthcare professionals to prompt discussions about the brain and gut connection to normalise any concerns around mental health and explain what this means for a person living with IBD and why it’s important to regularly check-in regarding psychological wellbeing

Prof. Leong pointed out there’s added benefits for gastroenterologists in making mental health screening the norm. “What I’ve observed is that sometimes you’ve got a patient who by all other measures has mild disease, but reports considerable distress or symptoms that don’t match the pathology.

Before we knew about the gut/brain [connection] we’d have been likely to escalate their treatment. I’ve seen cases where depression was an early warning sign for a flare.”

Prof. Leong provided some advice on how to talk about symptoms and screening questions to use with patients who have raised flags when it comes to psychological distress.

“The Hand in Hand resources are based on the validated K10 questionnaire and provide support options when depression or anxiety is identified. There’s a range of services patients can access and the CCA Hub makes them easy to access from one place. While not everyone has the luxury of an IBD psychologist in their facility, leveraging Mental Health Care Plans can make psychologists more accessible,” explained Prof. Leong.

A/Prof. Raven also pointed out CCA is engaging with patients to make the simple wellbeing checklist and supporting resources accessible from their CCA Hub. “We’re continuing to encourage patients to use the resources themselves and broach the subject with their doctor proactively. What we need healthcare professionals to do, is embrace the conversation. A simple comment like ‘many of my other patients have reported similar feelings’ goes a long way to break down the barriers.”

As a parting comment, A/Prof. Raven offered some ways gastroenterologists can get behind the campaign. “We’d love to see the [wellbeing] checklist in waiting rooms. They’re quick to do and an easy ice breaker. Let’s make sure [our] next survey shows how much we’ve been able to bring psychological wellbeing into the spotlight.”

We all have a role to play 

This article was sponsored by Janssen-Cilag Pty Ltd, which has no control over editorial content. The content is entirely independent and based on published studies and experts’ opinions, the views expressed are not necessarily those of Janssen-Cilag Pty Ltd.

References:

1. My IBD experience. Australian inflammatory bowel disease patient experience of health care. Research report 2018.

2. Hand in Hand survey conducted at AGW September 2019. Janssen data on file

3. Oligschlaeger, Y., Yadati, T., Houben. T., et al. Cells, 8,659,1-26, June 2019.

4. Mikocka-Walus, A. et al. Inflamm Bowel Dis 2016;22:752–762