Lost in translation: One in three Australians with inflammatory bowel disease experience disconnect with doctor

One in three Australians with inflammatory bowel disease (IBD) left their medical consultations with misunderstandings about what was discussed, posing risks to their safety and the management of their condition, according to a new study from The Australian National University (ANU).

IBD includes Crohn’s disease and ulcerative colitis, both lifelong inflammatory diseases affecting the intestines. IBD occurs when the body’s natural defence system mistakenly attacks healthy bowel cells.

Australia has one of the highest rates of IBD in the world. 17,6000 Australians were estimated to be affected by IBD in 2019. This number is expected to rise to 290,000 Australians by 2030 (over 1 per cent of the population).

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.”

The study found that 36 per cent of consultations showed misalignment, with 40 per cent occurring in understanding patient concerns and 60 per cent 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 renowned gastroenterologist, Professor Susan Connor, from 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,” Dr 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, another form of IBD, 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,” she 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 with 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,” Dr Connor said.

The research is published in Patient Education and Counseling.