Mark W. Reid, PhD
Mark W. Reid, PhD

Poster 1743 Effects of IBD on Patient Health-Related Quality of Life: Insights from the Online Community

Author Insights from Mark W. Reid, PhD, CS-CORE Research Lab

What’s new here and important for clinicians?

This study employs a novel method of collecting data on the IBD patient experience. Instead of using focus groups to understand health-related quality of life (HRQOL) changes that occur as part of IBD, we collected data from Twitter and patient-focused message boards – a method referred to as digital ethnography. A key benefit of this strategy is that patients are presenting “free range” information, without prompts from a doctor or closed-ended survey questions. Thus, patients not only verify much of what we already know about IBD HRQOL (e.g., high levels of frustration, anxiety, and catastrophizing, or fearing the worst could happen), but also report development of an external locus of control (i.e., feeling like their symptoms are out of their control). They also report positive changes in HRQOL, such as increased activity or group support, that are not captured using typical methods. Clinicians should be encouraged to understand how IBD impacts their own patients’ HRQOL, and to develop treatment plans that improve functioning across life domains as opposed to merely addressing symptoms of IBD.

What do patients need to know?

Patients should know that when they express frustrations and ask questions online, doctors now have a means of listening to them. IBD patients should also be encouraged to seek out social support online, since many of the patients we identified reported that social interactions with other patients made them feel better. When patients are reduced to limited interactions solely with care providers, they often express frustration and may feel alone. Online forums allow patients to interact with other individuals who feel the same way, allowing them to share information and inspiration.

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Mark W. Reid, PhD, CS-CORE Research Lab.

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