Visual Representation of IBD on the Internet and Media Does not Align with National Population, Affects Outcomes

Visual images on the internet and other forms of media are widely used to distribute health information. According to a study published this month in Gastroenterology, images on the internet and social media can influence both clinicians’ and patients’ perceptions of diseases. Positive images can help providers empathize with patients and improve communication, while negative images contribute to stigma and stereotypes associated with illnesses.

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, often carries the stigma of a burdensome disease associated with pain, fatigue, and frequent bowel movements. In turn, disease-associated stigma contributes to worse quality of life and treatment outcomes.

Oliva Kahn-Boesel, M.D.

Study authors Olivia Kahn-Boesel, M.D., from Harvard Medical School in Boston and her colleagues sought to understand how visual images of IBD are presented to the public on the internet and in television commercials.

The researchers conducted a Google search on March 2 and 3, 2023, of the terms “inflammatory bowel disease,” “Crohn’s disease”, and “ulcerative colitis”. The first 100 images for each search term were included in the study. Eight IBD-related and several biologic manufacturer patient-facing websites were also searched for images. Finally, the authors searched iSpot.tv from January 1, 2022, through January 25, 2024, for commercials for six disease-modifying treatments (DMT) used for Crohn’s disease or ulcerative colitis.

Among others, the patient-facing websites searched included Crohn’s and Colitis Foundation, the CDC IBD site, and the National Institute of Diabetes and Digestive and Kidney Disease Crohn’s disease and ulcerative colitis. Television commercials for the following DMTs were included: Entyvio (vedolizumab), Stelara (ustekinumab), Humira (adalimumab), Zeposia (ozanimod), Rinvoq (upadacitinib), and Skyrizi (risankizumab).

The images collected were assessed for portrayal of the disease (positive, negative, or neutral) based on the facial expressions and activities portrayed in the images. Visually estimated age, sex, and race of persons in the images were also assessed.

Of the Google images obtained, 70% were negative portrayals, including depictions of distress or grimacing, pain, and difficulty doing daily activities. Most images (61%) appeared to be of men and racially white individuals (74%). Regarding age, 71% of images appeared to be of young adults, and 26% were of middle-aged individuals. In comparison, nationwide, 76% of patients with IBD are white, 57% are female, and 26% are 65 years or older.

Television commercials yielded positive depictions of the disease. Of these, 49% appeared to be white, 56% female, 18% Black, 16% racially ambiguous, and 78% appeared to be young or middle-aged. An additional 16% appeared to be children.

Patient-facing websites depicted 65% positive and 25% neutral images. Of these, 58% appeared to be female, 47% white, 22% Black, and 79% young or middle-aged. Pharmaceutical company websites depicted 80% positive and 19% neutral images. Of these, 60% appeared to be female, 55% white, 25% Black, and 76% young or middle-aged. An additional 14% were older adults, and 10% were children.

The authors conclude that the visual representations of patients with IBD do not align with current national demographics, given the changing characteristics of the national population with IBD. Namely, the incidence of IBD has increased in both nonwhite individuals and older adults in the U.S.

They wrote, “It is critical to understand how IBD is visually represented to design and target interventions to combat stigma and stereotypes. This may help avoid diagnostic delays, mitigate stigma, and avert poor outcomes.”