More than half of online discussions about biologic treatments for IBS are negative experiences and concerns, according to an analysis of social media and online forum posts.

A qualitative study of a sub-set of 15,000 posts identified decision-making, positive experiences, information and support seeking, and costs of biologics as the other main themes.

Alongside questions about side effects and concerns for future risks such as cancer, were exhortations for juice diets and natural healing.

The findings raise the perennial question about the quality of information sourced online, especially from peers rather than health professionals.

Dr Greg Moore, head of the IBD unit at Monash Medical Centre and a director of Crohn’s & Colitis Australia, told the limbic online information could be both good and bad.

“If you’re savvy, there are some fabulous online resources out there – for example, the Crohn’s & Colitis Foundation of America, CC UK, CC Canada and Crohn’s & Colitis Australia. The lived experience of some patients can be very valuable,” he said.

He added that Crohn’s & Colitis Australia have recently launched iConnect – an online platform providing peer-to-peer support for people with IBD.

“There is a lot of benefit on the internet but patients need to start with reputable sites and safe information.”

Dr Moore said it was regrettable that discussions tended to dwell on the negative, leading to ‘an unbalanced representation of the general experience of IBD’.

“Patients overestimate the risks of treatment and underestimate the risks of not treating their disease,” he said.

The researchers said their findings demonstrated the complexity that patients face when weighing the risks and benefits of initiating, changing, continuing or discontinuing biologics.

They called for online decision support tools to assist patients in their decision- making.

They also said it was important for healthcare providers, patient groups and professional associations to have an online presence to improve the quality of IBD and treatment related information.

Dr Moore said doctors should ensure patients with IBD were actively engaged in the decisions around their treatment plans.

“We also have to ask if there is anything else they need to know; if they have enough education and support; and we have to provide links to evidence based information. We can’t just treat the inflammation.”

“No doubt there are issues that are not being addressed by clinicians. For example we know patients’ beliefs about diet are completely discordant with those of doctors.”