Patients with inflammatory bowel disease (IBD) are at increased risk of infections, bone fractures and skin cancers. Preventive health educational messages delivered to patients may reduce the risks of these complications. With patient input, we developed video messages and tested their impact compared to text-based messages. 1056 IBD Partners participants received either video or text-based health reminder messages. The study investigated reminder messages for influenza vaccine, pneumonia vaccine, skin cancer screening, bone health and shingles vaccine. This study found that video and text-based messages for all five topics had a similar impact on intent to get needed care. For the main outcome of influenza vaccine, 57% had received a flu vaccine prior to the preventive health messages, while 73% reported they intended to get a flu vaccine after the intervention. Further studies are measuring whether people followed up to get the needed care.



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Patients with celiac disease (an autoimmune disorder where eating gluten can damage the small intestine) benefit from a gluten free diet (GFD). Few data are available to tell us if patients with inflammatory bowel diseases (IBD) may also benefit from this diet. Individuals with GI symptoms such as bloating, abdominal pain, diarrhea, fatigue and nausea can have non-celiac gluten sensitivity, for which a GFD can be beneficial. Non-celiac gluten sensitivity can also co-exist with IBD. We therefore asked patients enrolled in CCFA Partners whether they have ever tried a gluten free diet (GFD), whether they followed this diet closely, and whether it helped with any symptoms. A total of 1647 people took the survey on GFD. A total of 314 (19.1%) reported that they had ever tried a GFD and 135 (8.1%) were currently following the diet. Overall, 206/314 (65.6%) trying a GFD reported improvement in any GI symptom while on this diet. Over a 1/3 of people (38.3%) felt that they experienced fewer or less severe flares while on the diet. Improvements in clinical symptoms were reported for bloating (56.5%), diarrhea (42.6%), abdominal pain (41.5%), fatigue (27.5%), and nausea (26.3%) while on a GFD. Fatigue was significantly improved with excellent adherence to the diet. Because many patients had improved symptoms on the GFD, it is possible that patients with IBD could suffer from non-celiac gluten sensitivity. Fewer people who felt better on a GFD were taking biologics medications, suggesting that flare symptoms in those with more severe disease may not respond to a GFD. Future studies are needed to understand the benefits of this diet in IBD patients, and the mechanism of improvement with this dietary intervention.

Earlier studies have shown that people who participate in surveys (such as CCFA Partners) may respond better to survey requests if these have a time limit (such as telling participants that surveys need to be done in 72 hours). This is called "scarcity." Other ways to improve survey response include messages targeting: paying it forward (that what you are doing will help people in the future), guilt, altruism (helping others), and self-serving (helping yourself). Our goal was to see if scarcity or these messages improved response rates within CCFA Partners. The scarcity group received a 'warning' email informing them that they will be sent a survey link the next day, and that they will have 72 hours to complete the survey. The control group received no warning email. We also tested the four different messages described above and a "control" message that just informed patients that it was time for their survey. We sent emails to a total of 8697 people within CCFA Partners asking them to complete their follow-up surveys. Of these, 2965 started their follow up survey. There was no difference between those in the 'scarcity group' as compared to control group. Scarcity was, however, more effective in the >50 age group. Of the messages, guilt resulted in a significantly higher response rate, while the other messages were no different than control. In summary, behavioral interventions applied to an internet-based IBD cohort have little benefit in improving response rates. Guilt had the strongest effect. The reasons that the other messages did not work may be that these interventions don't apply in an IBD population, that e-mail messages are not as effective, or that members of CCFA Partners are already very motivated to fill out surveys.