When IBD patients start taking a new medication, it can be hard to know if it will finally be the medication to help achieve remission, or if the side effects will impact sleep, social life, and ability to work. Over 400 IBD Partners participants took part in the COMPARE study to compare the effects of Entyvio vs. Stelara for Crohn's disease and Entyvio vs. Xeljanz for ulcerative colitis. Our patient partners identified fatigue and pain as outcomes of particular interest for this research to focus on.

For Crohn's disease, the study showed that there were no significant differences in the way Entyvio and Stelara affected patients' fatigue levels or the way pain impacted their lives. The results were similar for most other measures as well, although Stelara was associated with lower steroid use and more patients discontinued Entyvio.

For ulcerative colitis, study participants using Xeljanz experienced less pain as compared to participants using Entyvio. There were no significant differences in fatigue or other outcomes.

The results suggest that for both Crohn's disease and ulcerative colitis, patients generally function similarly with either medication. Patients and their physicians need to consider many factors that may influence which medication is right for them.

Full Published Manuscript for Crohn's Disease

Full Published Manuscript for Ulcerative Colitis

Urgency, which is the immediate need to defecate, is common in IBD. In this study, we evaluated the relationship between urgency in ulcerative colitis patients and outcomes like quality of life and hospitalizations.

We studied 632 patients with UC. Urgency, described as "hurry," "immediately," and "incontinence," was associated with many factors like social isolation, depression, anxiety, and fatigue. It was also associated with increased risk of hospitalization, steroids, and surgery.

These findings support using urgency as an important quality of life outcome to be studied in clinical trials.

In this initial sample, 300 of 317 participants (95%) had detectable anti-spike antibodies after completing their COVID vaccine series indicating that the vast majority of patients with IBD mount an immune response following complete immunization.

Antibody responses were relatively similar across IBD medication classes, although slightly decreased among individuals taking steroid medications such as prednisone.

Although many questions remain and ongoing research efforts will help to further optimize immunization strategies for patients with IBD, these findings provide reassurance that most patients mount detectable humoral immune response to mRNA vaccinations and support current recommendations to vaccinate patients regardless of immunosuppressive treatment.

Children and teenagers with Inflammatory Bowel Disease (IBD) are at increased risk of being unhappy with their body image. This study aimed to learn more about how common body image dissatisfaction (or "BID") is among these children and teenagers and to see if we could point to any risk factors for having BID. A total of 664 participants in the IBD Partners Kids & Teens study, ages 9-18, completed an online survey about anxiety, depression, disease activity, and quality of life. We found that about 3% of participants met the criteria for having BID by selecting the answer choices "I look awful" or "I look bad" when asked about their appearance. Young patients with BID tended to have worse disease, to be taking steroids, to be female, and to be diagnosed at an older age. These participants were also much more anxious and depressed than those who were satisfied with their appearance. Pediatric patients with BID should discuss these concerns with their physicians and healthcare teams.

Variation in care of patients with Crohn's disease (CD) and ulcerative colitis (UC) has been used as a marker for quality differences. We studied whether important aspects of IBD patients' care in CCFA Partners varied based on where their GI doctor was in practice. We compared patients who saw an academic (university) GI physician, a private practice GI physician, or other GI physician (such as a Veteran's Affairs physician). The study included about 12,000 IBD patients. Almost 95% reported visiting a GI provider at least once a year: about 74% saw a private practice physician, 15% academic, and 11% other. Those patients with CD seen by academic physicians were younger, has completed higher education, used less mesalamine medications, and used more biologics and immunomodulators. They were more likely to be in remission, were more likely to get a flu shot, smoked less, and were less likely to be on steroids when compared to private or other physicians. Patients with UC seen by academic providers were younger, had more hospitalizations and surgery, with greater biologic and immunomodulator use. There was no difference in steroid use, and no differences in any of the other measures like remission rates, flu shot, quality of life. In summary, there was much more variation in CD care as compared to UC care, with improved outcomes for CD patients seen by academic providers. Studying why this is the case, could help us to improve the quality of care delivered to all IBD patients.

People with inflammatory bowel disease (IBD) have an increased risk of blood clots due to having inflammation. Other risk factors can include things like smoking, using steroids, and being overweight. Most forms of hormonal contraception (birth control pills) have estrogen which can also increase clotting risk. We studied whether people with IBD that had risk factors for clotting were also put on birth control pills. This could be an opportunity for prevention (as other birth control options are available that do not increase clotting risk). Over 3000 women with IBD completed surveys asking about birth control methods and other risk factors for clotting. Birth control pills were used in over 30% of women with IBD. Women with risk factors for clotting (smoking, steroids, obesity) still had the same rates of birth control pill use as those without these risk factors. Based on this study, it is important for GI doctors to ask patients about birth control use and find out whether they also have other risk factors for a blood clot. By changing the form of contraception, this could prevent a complication of a blood clot in the future.

Older patients with inflammatory bowel disease, or IBD, often have higher rates of hospital stays and disease complications. Past studies have shown that medical treatment plans for older IBD patients may be different than those for younger patients. One difference is that treatment plans for older IBD patients involve increased use of 5-aminosalicylates (5-ASA) and corticosteroids. It is not known how continuous use of steroids by older patients affects anxiety, depression, sleep, and fatigue. Using data from CCFA Partners surveys we wanted to 1) describe medication use in older versus younger IBD patients and 2) determine whether continuous use of steroids by older patients leads to differences in anxiety, depression, sleep, and fatigue. We found that medication use is different among older patients. Older patients with Crohn's disease have more continued steroid use than younger patients. Continued steroid use was associated with worsened anxiety, sleep, and fatigue. Also, steroid use alone in older Crohn's disease patients was associated with increased depression and anxiety. As in younger IBD patients, our findings support limiting the continuous use of steroids for treatment of IBD in older populations.