Research has shown that patients with chronic diseases have better health outcomes if they are knowledgeable, skilled and confident in managing their disease. In this study, researchers wanted to find out if this is true for patients with IBD. To evaluate this, they delivered a survey called the Patient Activation Measure to 1,486 patients with IBD. Based on this survey, patients are placed on one of four levels. The lowest level is Level 1, “disengaged and overwhelmed.” The highest level is Level 4, “maintaining behaviors and pushing further.” Follow-up data available for 1082 survey participants (73%) showed that patients with high activation (levels 3 or 4) were more likely than those with low activation (levels 1 or 2) to be in clinical remission 6-12 months after the initial survey assessment.

Symptoms (pain, fatigue, sleep disturbance, depression, and anxiety) are common among people with Inflammatory Bowel Disease (IBD). We know people do not experience only one symptom and symptoms may occur is clusters. Symptom clusters are two or more symptoms that occur together and are related. Understanding how symptoms cluster is needed so that we can develop methods that decrease multiple symptoms in IBD. The purpose of this study was to (a) describe how symptoms cluster in IBD, and (b) to describe the relationship between demographic and clinical factors and symptom cluster membership.
In this study, we used the CCFA Partners Cohort and the symptoms of pain interference, fatigue, sleep disturbance, anxiety, and depression. There were 5,296 participants with an average age of 44 years, and the sample was 72% female. We discovered four symptom cluster groups. The first group was labeled “low symptom burden” (26%), and this group had symptoms of pain, fatigue, sleep disturbance, depression, and anxiety. The second, and largest group (38%) was labeled “high symptom burden,” and included pain, fatigue, sleep disturbance, depression, and anxiety. The third group included 22.09% of participants, was labeled “physical symptoms,” and had the symptoms of pain, fatigue, and sleep disturbance. The fourth group “psychological symptoms,” was the smallest group at 14.22%, and included the symptoms of anxiety and depression. Being female, having a history of smoking, currently taking corticosteroids, Crohn’s disease, and active disease state were associated with belonging to the high symptom burden group compared to the low symptom burden group. Additional research is needed to test strategies that may be effective at reducing symptoms in people with IBD.

Patient reported outcomes (PROs) are important measures of how well treatments work in inflammatory bowel disease (IBD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a scale for measuring PROs for physical, mental, and social health. A gastrointestinal (GI) PROMIS scale was recently developed based on responses from people across the United States. The GI PROMIS scale includes questions about eight common GI symptoms: gas, reflux, diarrhea, soilage, constipation, belly pain, nausea and vomiting, and difficulty swallowing. We studied these questions in 2,378 people with Crohn’s disease (CD) and 1,455 people with ulcerative colitis (UC) in CCFA Partners. About half of the participants reported being in remission. Compared to participants in remission, those with active CD reported worse symptoms on the GI-PROMIS scale for all symptoms. The same was true for participants with active UC with the exception of difficulty swallowing. Participants with worse quality of life reported worse symptoms on the GI-PROMIS scale for all symptoms. Participants with more diarrhea, belly pain, and gas reported poorer mental and social PROs. In summary, participants who reported worse GI-PROMIS symptoms also reported worse qualify of life, disease activity, and mental and social outcomes. These results suggest that the GI-PROMIS scales could be an important way to measure symptoms in the future.

We studied how often women and men with inflammatory bowel disease (IBD) seek care for infertility (problems getting pregnant). We also looked at reasons why individuals had trouble getting pregnant. A total of 12.5% of women in CCFA Partners went to see a doctor for problems getting pregnant. This was a little higher in women with Crohn’s disease (14.1%) than in women with ulcerative colitis (9.5%). Risk factors for needing help getting pregnant were: prior GI surgery and older age. The most common cause of fertility problems in women was blocked fallopian tubes. For men, 8.7% needed help with fertility. Age was a risk factor. The most common cause of fertility problems was a problem with their female partner. Nearly 80% of women and men who went to the doctor for fertility problems were able to get pregnant. These rates of pregnancy with fertility treatment are similar to those of people without IBD.

Patient reported outcomes (PROs) are important measures of how well treatment works in Crohn’s disease (CD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a new scale for measuring PROs for physical, mental and social health. The results can be compared to those from people that don’t have IBD. A gastrointestinal (GI) PROMIS scale was recently developed. The GI scales were not studied in large numbers of Crohn’s patients, but were studied in people all across the United States. We studied these questions in 1839 people with Crohn’s disease in CCFA Partners. Most (75%) were women. People with Crohn’s disease reported more fatigue, anxiety and pain compared to people without Crohn’s disease. People with Crohn’s disease reported less reflux, problems swallowing and constipation than people without Crohn’s disease. Other GI symptoms for people with Crohn’s disease were similar to those reported by people without Crohn’s disease. Compared to people in remission, people with active CD reported worse symptoms on the GI-PROMIS scales for all symptoms except problems swallowing and constipation. Those with a worse quality of life, as measured by the Short IBD Questionnaire (SIBDQ), reported worse symptoms on the GI-PROMIS scales all symptoms. People who reported more nausea, diarrhea, gas/bloat and abdominal pain reported more psychosocial symptoms on the PROMIS scales. In summary, those with worse symptoms on the GI-PROMIS scales scored worse disease activity scales, quality of life scales and more symptoms of depression and anxiety. These scales could be important ways to measure symptoms in the future.

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.

Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll.

In the OSCCAR cohort, 243 of the 320 participants consented to join the CCFA-Partners cohort. However, only 44 participants completed enrollment in CCFA-Partners. OSCCAR participants who completed enrollment were better educated than those who did not complete enrollment. In the SHARE cohort, 436 participants completed enrolment in CCFA-Partners. SHARE participants who completed enrollment were more often women and white. If they had Crohn’s disease, those who completed enrollment had fewer disease symptoms and if they had ulcerative colitis, those who completed enrollment had less extensive disease. Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand opportunities for research. Although linkage is possible, participant’s willingness to complete the linkage is the limiting factor. Asking participants in a traditional cohort at the time of enrollment may be a way of maximizing linkage to CCFA-Partners.

Depression is common among patients with Crohn’s disease (CD). In this study, we wanted to understand if CD patients in remission who reported symptoms of depression were more likely to experience worsened CD symptoms later in time. To answer this question we looked at responses to CCFA Partners survey questions submitted by more than 2,000 CD patients about negative mood (I felt depressed), negative beliefs about the self (I felt worthless, I felt hopeless), and decreased life engagement/negativity (I felt hopeless) during the past seven days. Twelve months later, we asked about the severity of their CD activity using a standard CD questionnaire about diarrhea, pain, and well-being. We found that symptoms of depression predicted CD activity a year later. In other words, CD patients who were depressed were more likely to have CD symptoms a year later than those who were not depressed.

Dietary fiber is found in plant foods such as fruits, veggies, and whole grains. Past studies found that dietary fiber can affect bacterial colonies in your stomach and intestines. However, there is limited information about how dietary fiber affects inflammatory bowel disease (IBD) symptoms. In this study, we looked at fiber consumption and whether it was associated with flares in adults with IBD. A total of 1619 participants in CCFA Partners completed a diet survey and a follow-up survey 6 months later. We found that participants with Crohn’s disease who reported eating the most fiber were less likely to have a flare within a 6 month period. In addition, participants with Crohn’s disease who told us they did not avoid high fiber foods were about 40% less likely to have a flare than participants who told us they avoid high fiber foods. Interestingly, we did not find an association between fiber consumption and disease flares among participants with ulcerative colitis. In summary, eating foods high in fiber may help reduce risk of flares among patients with Crohn’s disease.

Little is known about how exercise impacts disease activity in patients with inflammatory bowel disease (IBD). This study explored the relationship between exercise level and disease activity in a large group of patients with IBD in remission. A total of 1,857 patients from the CCFA Partners cohort participated by answering online questions about their exercise level and disease activity at the beginning of the study (in remission) and then again after six-months. We found that participants with Crohn’s disease who reported higher levels of exercise at the beginning of the study were significantly less likely to report active disease six-months later. We also found this association among participants with ulcerative colitis (UC) and indeterminate colitis (IC), but the results were not significant. Results of this study suggest that for patients with Crohn’s disease (and possibly for patients with UC and IC) who are in remission, higher levels of exercise may reduce the risk of developing active disease in the short-term.

People with inflammatory bowel disease (IBD), like Crohn's disease and ulcerative colitis, tend to have poor quality of sleep. In this study of over 3000 people with IBD, those with more disease activity, depression, female gender, a history of smoking, or those currently taking corticosteroids or narcotics were more likely to have sleep disturbance. Of people with Crohn's disease who were in remission at the beginning of the study, those with sleep disturbance were twice as likely to have a flare in 6 months. No effect was seen for ulcerative colitis. These results suggest that sleep is important for maintaining remission in IBD.