Social media use in patients with inflammatory bowel disease and chronic viral hepatitis

Chronic disease treatment and management is a long-term process in which patients need to be regularly monitored. This is often troublesome as it interrupts work and home life; this is especially true in cases where the chronic illness is diagnosed at a relatively young age, such as inflammatory bowel disease (IBD) and chronic viral hepatitis (CVH), both of which have an average age of onset between 15–30 years old. The patients within this group are part of the so-called ‘social network generation’.¹ 32 million adults use Facebook² and 41% of those check it more than once a day³. It is clear that social networking is becoming a major source of communication and education.

It has been shown that social networking has being used by patients with chronic illness as a platform to discuss management, diagnosis and treatments, experiences and also to gather information and support.⁴

We investigated patients’ current social media use and attitudes toward the potential role social media could have in reducing their hospital visits.

Over a 1 month period patients with IBD and CVH attending the Gastroenterology and Hepatology Outpatient Department of St. George's Hospital were identified. Convenience sampling was used; all patients with IBD and CVH encountered in these clinics were asked to participate. Patients were asked to complete a questionnaire which gathered information about their disease, current use of social media and their views about social media in the management of their disease.

One hundred and eighty patients participated in the study: 95 patients were male and 85 were female. The mean age was 38.9 years (range 15–85 years). 112 patients had IBD and 68 had CVH. The mean age for the patients with IBD was 39 years (range 16–85 years) and the mean age for the patients with CVH was 38.6 years (range 15–63 years). 46 (43.75%) of the patients with IBD and 49 (72%) of the patients with CVH were male.

Social media use was commonplace, with many individuals using more than one site (Fig 1). Of those using social media 29.5% of patients with IBD used it for support with their illness; 45.5% of these belonged to or were following a specific group. For patients with CVH the figures were 33.8% and 60.9%, respectively.

Fig 1.

Social media use in IBD and CVH patients. CVH = chronic viral hepatitis; IBD = inflammatory bowel disease.

84.4% of the patients with IBD and 72.9% of the patient with CVH questioned would be happy to have some interaction by healthcare professionals via social media. 84.8% of patients with IBD and 72.1% of patients with CVH would like a new social media website solely for their health in which they can interact with a healthcare professional on a one-to-one basis.

We have identified that a large proportion of patients with IBD and CVH use social networking sites. This survey suggests that the majority of both patients with IBD and patients with CVH would welcome the use of social media as part of their illness management. There are already some social media sites that have been set up for these patient groups. Increasing the awareness of these sites and carrying out further research investigating the integration of social media into the current management of both these patient groups is needed.