30% of IBD patients disconnected from clinicians: Professor Susie Connor

One in three Australians with inflammatory bowel disease (IBD) are leaving their medical appointments with critical misunderstandings about their condition and treatment – gaps in communication that could put their health at risk, according to a new study from The Australian National University (ANU).

With Australia ranking among the highest globally for IBD cases—including Crohn’s disease and ulcerative colitis – the urgency to bridge these communication failures has never been greater. In 2019, an estimated 176,000 Australians were living with the condition, a figure projected to skyrocket to 290,000 by 2030.

Study lead author, Dr Neda Karimi from the ANU Institute for Communication in Health Care, said the research provides strong evidence that simple changes in how doctors and patients talk to each other can have a big impact. 

“There is complexity in IBD treatment, and patients often don’t understand their condition and its treatments. Similarly, doctors aren’t getting the full picture of their patients’ issues and concerns,” she said.

“Our study found that when doctors and patients repeat key messages in different ways, provide more detailed explanations, use examples, and ask for additional information, it helps to create a better shared understanding, all without extending the length of the consultation.”

Misalignment was identified in 36% of consultations, with 40% occurring in understanding patient concerns and 60% in management plans. The researchers combined detailed linguistic analysis of consultations with data analysis. They identified key predictors of misalignment, including patients not elaborating and clarifying their concerns and doctors not asking follow-up questions or providing well-defined explanations. 

“Our findings underscore the importance of open communication and self-advocacy from the patient, as well as the need for clinicians to actively listen, demonstrate genuine interest in understanding patients’ concerns, and share clinical reasoning in a clear and accessible manner,” Dr Karimi said.

“Misalignment can occur with any doctor. We found no patient demographic variables that predicted misalignment, such as gender, age, or education.”

According to study co-author and IBD gastroenterologist, Professor Susan Connor from Liverpool Hospital and UNSW, the key factors for clinicians to keep in mind include recognising missed opportunities for shared understanding, listening, and discussing uncertainty. 

“A consultation comprises three key components: gathering the patient’s history, developing a management plan, and executing the plan. Our study revealed that shared understanding is particularly vulnerable during the first two stages of this process,” she said.

“Communication, not time, is key to achieving a shared understanding. The length of consultations was not a predictor of misalignment, addressing a common concern among doctors.”

The researchers believe the stigma and shame associated with IBD can impact communication, with the lack of recognition in Australia of IBD as a common chronic disease causing more confusion in the community.

“With a rising prevalence of IBD in young people, there is a need for better communication,” Professor Connor said. “This goes beyond just the doctor and patient; there needs to be recognition in the community so that people can realise what it’s like to live with IBD and also be comfortable to discuss it openly.”

Rayan El-Chahal was only 13 years old when she was first diagnosed with Crohn’s disease in 2019. She experienced severe abdominal pain initially, leading to a diagnosis seven months later. Rayan’s mother, who has ulcerative colitis was able to help navigate her IBD diagnosis.

Rayan’s treatment involved infusions, with symptoms including nausea, vomiting, and bowel obstructions. She recently transitioned to an adult gastroenterologist at Liverpool Hospital, where she underwent surgery last October. 

“Informative, communicative healthcare providers were so important on my IBD journey,” El-Chahal said. “There is a need for better community understanding and education about IBD as many people still don’t know what it is, and for young people with IBD, it can be quite hard to share their experiences openly due to feelings of shame.”

According to the researchers, a cultural shift to raise awareness about communication issues within the medical profession is also needed.

“It would be worthwhile to investigate whether programs designed to improve clinical communication bring about real change in terms of the level of understanding between patient and doctor,” Professor Connor said.

The research was co-authored by other well-known IBD gastroenterologists including Dr Viraj Kariyawasam and Professor Jane Andrews.

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