Published Studies
Year | Publication | Categories |
---|---|---|
2023 |
Results from the COMPARE Study – How Do Different Medications Impact IBD Patients?
Summary 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. Keywords COMPARE; Entyvio; Stelara; Xeljanz; vedolizumab; ustekinumab; tofacitinib; patient-reported outcomes; pain; fatigue; comparative effectiveness; Crohn s disease; ulcerative colitis; |
Medications |
2023 |
Do Medicines for Inflammatory Bowel Disease Affect the Risk of COVID-19 Infection?
Summary Some medications for IBD suppress the body's immune system and can therefore increase the chance of getting sick. The goal of this study was to learn whether taking IBD medication increased the chance of getting COVID-19 infection. Full Published Manuscript Keywords medications; covid; covid-19; pandemic; |
Medications, COVID |
2022 |
Psychological Factors Associated With Adherence to Oral Treatment in Ulcerative Colitis
Summary Self-determination theory (SDT) is a theory of motivation that presumes that humans have three basic psychological needs-autonomy, competence, and relatedness. Each of these needs impacts one's motivation to adhere to a medical regimen. For example, this might mean choosing to take prescribed medications (autonomy), having the mastery to take the medication correctly (competence), and having quality relationships to support those skills (relatedness). Learn more about this study on our blog. Full Published Manuscript Keywords medication; uc; ulcerative colitis; adherence; nonadherence; oral; oral med; meds; psychology; mental health; physicians; doctors; doctor; |
Medications, Healthcare |
2021 |
Humoral Immune Response to Messenger RNA COVID-19 Vaccines Among Patients With Inflammatory Bowel Disease
Summary 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. Full Scientific Manuscript Keywords covid; covid-19; vaccine; vaccines; antibody; antibodies; mRNA; RNA; |
Medications, Other |
2021 |
A Randomized Trial Comparing the Specific Carbohydrate Diet to a Mediterranean Diet in Adults with Crohn's Disease
Summary Researchers compared the effectiveness of a Mediterranean style diet to the Specific Carbohydrate Diet in nearly 200 Crohn's disease patients with mild-to-moderate symptoms on stable doses of medications. With both diets, nearly half of the patients experienced resolution of their symptoms. After six weeks, 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet achieved symptomatic remission. Full Scientific Manuscript Keywords scd; specific carbohydrate diet; specific carbohydrate; md; mediterranean; mediterranean style diet; mediterranean diet; diet; |
Diet |
2021 |
Pregnancy and Neonatal Outcomes After Fetal Exposure to Biologics and Thiopurines Among Women With Inflammatory Bowel Disease
Summary Researchers included nearly 1500 women with Crohn's disease and ulcerative colitis who became pregnant. To better understand pregnancy outcomes, those on medications like biologics were compared to those not on these medications. Children were followed for the first year of life. Full Scientific Manuscript Keywords Crohn s disease; ulcerative colitis; pregnancy; biologics; medication; |
women's health, Medications |
2018 |
Paternal Disease Activity Is Associated With Difficulty inConception Among Men With Inflammatory Bowel Diseases
Summary IBD commonly affects men and women during their reproductive ages. Because of this, researchers are interested in knowing how the disease affects fertility and pregnancy. Much research on the impact of IBD on fertility and pregnancy has focused on women, but for this study, researchers focused on men. They wanted to know how men's IBD and their use of IBD medication affect reproductive outcomes. The study results showed that men who received a diagnosis of IBD before trying to conceive were more likely to have difficulty conceiving than men who developed IBD after conceiving. However, these fi ndings were noted only in those with recently active disease within the past 6 months. Men with IBD who were in long-term remission were similar to the rates prior to development of IBD. Exposure to any of the medications for treating IBD was not associated with congenital anomalies, low birth weight or preterm births. Full Scientific Manuscript Keywords paternal; disease activity; men; fertility; pregnancy; |
Lifestyle, Health Maintenance |
2017 |
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners
Summary People with inflammatory bowel disease, or IBD, commonly experience diarrhea and abdominal pain. These symptoms are often related to inflammation associated with IBD. Sometimes these symptoms are related to both IBD and irritable bowel syndrome, or IBS. IBS is sensitivity of the intestine without inflammation. Patients with IBD who are diagnosed with IBS may experience changes in their care and well-being. We looked at the rate of IBD-IBS diagnosis in the CCFA Partners network. We also looked at how a diagnosis of IBD-IBS impacts outcomes, such as ability to perform normal daily activities, and use of specific medications. A total of 6309 patients were included, of these, 20% reported being diagnosed with IBS after their IBD diagnosis. Patients with both an IBD and IBS diagnosis had higher rates of narcotic use compared to patients with an IBD diagnosis alone. An IBS diagnosis was associated with anxiety, depression, fatigue, poor sleep quality, pain interference, and decreased social satisfaction. Appropriate diagnosis, treatment, and counseling may help improve outcomes experienced by IBD-IBS patients and reduce narcotic use in this group. Full Scientific Manuscript Keywords community; population; comorbidity; IBD-IBS; inflammatory bowel disease-irritable bowel syndrome; irritable bowel disease; IBS; |
Medications, Lifestyle, Mental Health |
2016 |
Patient-Reported Outcomes and Quality of Life in Patients with Ileal Pouch-Anal Anastomosis (IPAA)
Summary Between 20-35% of patients with ulcerative colitis (UC) have had a colectomy (surgery to remove part or all of the large intestine). The most common type of colectomy is called a "restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA)". This is a surgery to remove the large intestine and rectum and to create a small pouch out of the small intestine that is connected to the anus. This pouch is used to store stool and is often called a "J-pouch" (It is shaped like the letter "J"). Pouchitis (inflammation of the pouch) is the most common complication of this type of surgery and consists of symptoms of diarrhea and urgency. In this study, we wanted to know how many CCFA Partners participants have experienced pouchitis and what medications and characteristics are common among this group. To answer these questions we looked at survey responses submitted by more than 15,000 CCFA Partners participants. We found that 248 patients reported having an IPAA at some point in time. Of these patients, 82% also reported at least one episode of pouchitis. Patients with a history of pouchitis were more likely to use antibiotics. Patients who reported a recent episode of pouchitis (within the past six months) were more likely to report worse quality of life, depression, fatigue, and dissatisfaction with their social role. The majority of patients who have had a colectomy develop pouchitis at some point. During episodes of pouchitis, patients experience worse quality of life. Full Scientific Abstract Keywords IPAA; Ileal Pouch Anal Anastamosis; |
Lifestyle, Surgery, Medications |
2016 |
Variation in Care of Inflammatory Bowel Diseases Patients in CCFA Partners:Role of Gastroenterologist Practice Setting in Disease Outcomes and QualityProcess Measures
Summary 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. Full Scientific Manuscript Keywords healthcare setting; quality of care; remission; gastroenterologist; quality of life; QOL; medications; Crohn s disease; Crohn s; CD; ulcerative colitis; UC; colitis; |
Health Maintenance, Environment, Medications |
2016 |
Role of Nonsteroidal Anti-Inflammatory Drugs in Exacerbations of Inflammatory Bowel Disease
Summary Nonsteroidal anti-inflammatory drugs (NSAIDs, medications such as Advil, ibuprofen, naproxen, etc.) may cause GI inflammation in patients with inflammatory bowel disease (IBD). IBD patients are often told to avoid these medications. We looked at patients in CCFA Partners in who were in remission (with few to no symptoms) and asked about regular NSAID use. We then looked at whether they flared 6 months later. A total of 791 patients were included, of these, 40.6% reported ever using NSAIDS at baseline. Patients with Crohn's disease (CD) who regularly used NSAIDS (at least 5 times/monthly) had a 65% increased risk of later flare. No effect of regular NSAID use was seen for ulcerative colitis (UC). Those with CD who used acetaminophen (Tylenol) also had a 72% increased risk of later flare. Lower doses of NSAIDs had no association with flare. Therefore, regular NSAID use or acetaminophen use may increase the risk of flare in CD, but not UC. This may be related to effects of the medications. It is also possible that those people with IBD who require pain medications at baseline may not be in as full a remission, which may increase the risk of later flare. Full Scientific Manuscript Keywords active disease; nonsteroid; NSAID; anti-inflammatory; drugs; flare; risk; prevention; |
Medications |
2014 |
Prevalence of a Gluten-free Diet and Improvement of Clinical Symptoms in Patients with Inflammatory Bowel Diseases
Summary 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. Full Published Manuscript Keywords Gluten Free Diet; GFD; flare; active disease; risk; prevention; |
Diet, Lifestyle, Alternative Therapies, Health Maintenance |
2013 |
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD
Summary After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time. Full Scientific Abstract Keywords kids & teens; K&T; pediatric; age; kids; teens; community; population; resource; |
Research Methods, Study Updates |
2013 |
Immunization Rates and Vaccine Beliefs Among Patients with Inflammatory Bowel Disease: An Opportunity for Improvement
Summary Treatment for inflammatory bowel disease, or IBD, puts patients at risk of other infections, like influenza or the "flu", which could be prevented by vaccines. In a study of nearly 1000 patients with IBD, not enough said they were getting the vaccines they needed. Patients with a primary care physician and those taking immunosuppressive medications were more likely to get vaccines. The researchers recommend educating patients and encouraging gastroenterologists to ask and counsel patients on vaccines. Full Published Manuscript Keywords vaccine; vaccination; immunization; immunotherapy; |
Alternative Therapies, Lifestyle, Health Maintenance |
2011 |
Medication Adherence in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort
Summary In a survey of over 7000 patients with inflammatory bowel disease, or IBD, more than half of all patients got a low score on medication adherence questions, which means that most patients are not taking their IBD medications correctly all of the time. In general, people felt better when they had a high medication adherence score. The researchers recommend educating patients to improve medication adherence. Full Scientific Abstract Keywords relapse prevention; relapse; prevention; preventive; drugs; medication; adherence; compliance, educational interventions; education; outreach; community; population; |
Medications, Lifestyle |
2011 |
Status of Prevention in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort
Summary Patients with inflammatory bowel disease, or IBD, may be more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use. Fortunately, there are simple activities that can prevent these from occurring. In a survey of over 7000 patients with IBD, only about half had a bone density scan or took calcium or vitamin D supplements to promote bone health. Only 40% reported having a skin exam and 16% reported always wearing sunscreen to prevent skin cancer. Less than two thirds had an influenza (flu) vaccine. These results show that not enough patients are doing simple activities to prevent weak bones, infections and cancers that may be related to IBD. Full Scientific Abstract Keywords preventive; care; active disease; flare; prevention; risk; educational interventions; intervention; education; outreach; community; population; |
Research Methods, Health Maintenance |