YouTube as a Source of Information for Food, Diet-Related Items, and Advisory Comments for the Management of Inflammatory Bowel Disease

Abstract

Background Patients with inflammatory bowel disease (IBD) often use the Internet to seek information beyond that received from healthcare professionals. This study assessed the perceptions of YouTube presenters on the role of diet in the management of IBD. Methods Videos discussing dietary aspects (food, diet-related items, and advisory comments [FODRIACs]) in the management of IBD were included. The perceptions of presenters toward each FODRIAC were labeled as positive, negative, or neutral/intermediate, and FODRIACs were classified according to their underlying role in the management of IBD (eg, symptom management, gut inflammation). Subgroup analysis was performed by type of video presenter (patients vs healthcare professionals), type of IBD (Crohn’s disease vs ulcerative colitis), and reporting of scientific evidence supporting presenters’ perceptions. Results We identified 122 FODRIACs within 160 videos. Patient videos received a higher number of likes (median 85 [interquartile range, 35-156]) than healthcare professional videos (median 44 [interquartile range, 16-1440]) (P = .01). Scientific evidence was cited in 2 (3%) of 76 patient videos compared with 25 (35%) of 71 healthcare professional videos (P < .001). Positive perceptions were expressed about avocadoes, salmon, bananas, white bread, and rice, whereas negative perceptions were reported for processed, high-fat and high-sugar foods and carbonated drinks. Fewer negative perceptions were expressed in videos supported by scientific evidence than in videos that lacked evidence (scientific: 4 positive, 0 negative vs nonscientific: 7 positive, 20 negative; P = .01). Conclusions We have identified FODRIACs proposed as beneficial or detrimental in the management of IBD. The effect this information has on dietary practice as patients with IBD self-manage their condition needs further exploration.

What do people with inflammatory bowel disease want to know about diet? The dietary information needs of people with inflammatory bowel disease and perceptions of healthcare providers

“…Alarmingly, people with IBD modified their oral intake in response to advice received online. In a recent study of the content of online videos targeted at the IBD population, most videos made by patients for patients did not cite evidence‐based information, as opposed to HCP videos 37 . In light of these findings, it is particularly important that diet is not dismissed and appropriate counselling is provided from the time of diagnosis.…”

A scoping review of the dietary information needs of people with inflammatory bowel disease

“…Future research could consider building on the relevant findings of the included studies and delve deeper into what is the dietary information of interest for people with Crohn's disease and ulcerative colitis respectively, what barriers might exist to obtaining such information, and how and when this could be provided. A recent study looking at dietary advice provided in YouTube videos, highlighted lack of scientific evidence supporting some of the nutrition claims made 73 . How this influenced the views and actions of people with IBD is unclear, however, knowing that the internet is the second most used source of information, bears the question as to what role healthcare providers could play in supporting the sharing of evidence‐based advice 73 .…”

“…A recent study looking at dietary advice provided in YouTube videos, highlighted lack of scientific evidence supporting some of the nutrition claims made 73 . How this influenced the views and actions of people with IBD is unclear, however, knowing that the internet is the second most used source of information, bears the question as to what role healthcare providers could play in supporting the sharing of evidence‐based advice 73 . The exploration of social media posts and analytics of IBD online groups via social listening methodology would enable a more in depth understanding of content from a broader pool of individuals with IBD and a better understanding of the dietary information needs at a larger scale.…”

IBD barriers across the continents: a continent-specific analysis – Australasia

“…Compounding the issue of a lack of specialised IBD dietitians in Australasia are competing internet-based diets. These often lack an evidence-base and are fraught with testimonials of benefit from restrictive diets, potentially increasing risk of nutritional deficiencies, reduced food-related quality of life and disordered eating, 32 in an already at-risk population. 33 A lack of dietetic services will also impact the application of dietary therapy.…”