Published Studies
Year | Publication | Categories |
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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 |
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 |
2020 |
Trends and Characteristics of Clinical Trials Participation for Inflammatory Bowel Disease in the United States: A Report From IBD Partners
Summary Between 2011 and 2018, participation in randomized controlled trials (RCTs) for inflammatory bowel disease declined while available RCTs in-creased. Younger patients, patients in community settings, and patients with milder disease were underrepresented in RCTs. Nonparticipants had disease activity failing remission criteria, highlighting the role of RCT participation. Full Scientific Manuscript Keywords Clinical; Trials; older; academic; medical center; severe; disease; sicker; vedolizumab; ustekinumab; tofacitinib; under; age; community; facilities; underrepresented; newest; therapies; free; medication; procedures; all patients have; opportunity; |
Research Methods, Alternative Therapies, Medications |
2019 |
Changes in Patient-Reported Outcomes With Vedolizumab Therapy in Patients With Inflammatory Bowel Diseases (IBD): Results From the IBD Partners Patient Powered Research Network
Summary We studied whether patients starting Entyvio® (vedolizumab), who had previously used an anti-TNF biologic, such as Remicade® (infliximab) or Humira® (adalimumab), responded differently than people who had not used one of these therapies. We studied 380 patients with Crohn's disease and ulcerative colitis in the IBD Partners cohort who were starting vedolizumab. We found that patients who had not previously used an anti-TNF biologic had higher remission rates and improved quality of life. Full Scientific Manuscript Keywords Entyvio; vedolizumab; anti-TNF biologic; |
Medications |
2019 |
Variation Among Patients With Crohn's Disease in Benefit vs Risk Preferences and Remission Time Equivalents
Summary Full Scientific Manuscript Keywords Anti-TNF; Discrete Choice Experiments; Biologic; Corticosteroids; |
Medications |
2018 |
Profiles of Patients Who Use Marijuana for Inflammatory Bowel Disease
Summary Marijuana is legal in a number of states for indications that include inflammatory bowel diseases (IBD), and patients are interested in its potential benefits. For this study, we aimed to describe the legal use of marijuana in individuals with IBD in the USA who participate within the IBD Partners Patient Network. Approximately 2400 participants who lived in states where prescription or recreational marijuana was legal, were offered the chance to complete a survey on marijuana use and IBD symptoms. Surveys were completed by 1666 participants (71%). Within the surveyed group, 234 participants lived where both medical and recreational marijuana is legal and 49 mentioned recreational marijuana use specifically for IBD. Most of the users reported positive benefits, but users also reported more depression, anxiety, pain, and lower social satisfaction than non-users. Overall, we found that few IBD patients consulted their medical doctors about marijuana use or used prescription marijuana. Where recreational marijuana was available, usage rates were higher. Users reported benefits but also more I BD symptoms, depression, anxiety, and pain. Marijuana use may be higher in patients with IBD symptoms not well treated by traditional medical treatments. Full Scientific Manuscript Keywords Marijuana; Ulcerative colitis; Crohn s disease; Cannabis; Cannabinoids; |
Alternative Therapies, Medications, Health Maintenance |
2017 |
Symptom Clusters in Adults with Inflammatory Bowel Disease
Summary 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. Full Scientific Manuscript Keywords symptom clusters; pain; fatigue; sleep disturbance; depression; anxiety; low symptom cluster; high symptom cluster; Crohn s disease; CD; ulcerative colitis; UC ; |
Study Updates, Medications, Treatment |
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 |
Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners)
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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 |
2015 |
Medication Utilization and the Impact of Continued Corticosteroid Use on Patient-Reported Outcomes in Elderly Patients with Inflammatory Bowel Disease
Summary 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. Full Scientific Manuscript Keywords geriatric; elderly; age; steroid; corticosteroid; drugs ; |
Medications, Lifestyle |
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 |