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 |
2021 |
Urgency and its Association with Quality of Life and Clinical Outcomes in Ulcerative Colitis Patients
Summary 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. Full Scientific Abstract Keywords ulcerative colitis; UC; colitis; urgency; quality of life; |
Research Methods |
2021 |
Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes
Summary Post-traumatic stress (PTS) is a chronic psychological reaction to an event where the person experiences actual or perceived threat to life or bodily harm. PTS symptoms include nightmares, flashbacks, irritability or low mood, feeling keyed up or on edge, and avoiding situations that trigger trauma memories. Full Scientific Manuscript Keywords pts; post-traumatic stress; stress; trauma; |
Mental Health, Procedures and Testing |
2019 |
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
Summary The rate of diagnoses has increased for both obesity and IBD, and some research suggests that obesity may play a part in the development of IBD. About 15-40% of patients with IBD are obese, which is defined as having a body mass index (BMI) of 30 or higher. However, there has been little research on how obesity might affect outcomes in patients with IBD. In this study of nearly 7300 patients with IBD, we found that about one in 5 patients with IBD were obese. Obese patients were more likely to have active symptoms related to IBD, as compared to patients with normal BMI. Over a period of 12-18 months, we obs erved that obese patients with active disease were significantly less likely to achieve remission. Similarly, among patients in remission at baseline, obese patients were 2-3 times more likely to relapse on follow-up, as compared to patients with normal BMI. Obese patients with IBD were more likely to have anxiety, depression, fatigue, and experience pain. They were also less satisfied with their ability to participate in social roles. These effects were seen in patients with both ulcerative colitis and Crohn's disease. Future studies to find out whether treating obesity may improve outcomes in patients with IBD are needed. Full Scientific Manuscript Keywords Obesity, promis, disease activity; |
Lifestyle |
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 |
The impact of ostomy on quality of life and functional status of Crohn's disease patients within CCFA Partners
Summary Patients with Crohn's disease, or CD, may require surgery during the course of their disease. This can result in the need to create a permanent or a temporary ostomy. Ostomy is the term used to describe the surgically created connection between the intestine and the abdominal wall. It allows for the evacuation of the fecal matter through the abdominal wall. The potential need for an ostomy is a major concern for many patients with inflammatory bowel disease as it may impact their daily function and quality of life. Within the CCFA Partners network, we evaluated the characteristics of CD patients who had an ostomy for at least 6 months. We also looked at how ostomy impacts their daily function and quality of life. A total of 4733 patients were included, of these, 402 reported an ostomy for at least 6 months. Patients with ostomy were more likely to be in clinical remission compared to those with no ostomy. Also, only half the patients with ostomy were receiving specific IBD therapies. Having an ostomy did not impact the quality of life or sexual function (interest and satisfaction) of CD patients. Additionally, there was no association between having an ostomy and anxiety, depression, or sleep disturbances. However, having an ostomy was associated with increased pain interference, fatigue and lower social satisfaction. It was also associated with higher rated of narcotic use. Appropriate counseling before and after surgery can help improving social satisfaction for patients with ostomy. Further studies are needed to determine the nature of pain and fatigue in this population. Full Scientific Manuscript Keywords ostomy; quality of life; social health; Crohn's disease; crohn's; CD; |
Lifestyle, Mental Health |
2016 |
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Patients with Crohn's Disease in CCFA Partners
Summary 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. Full Scientific Abstract Keywords Patient reported outcomes; PROs; PROMIS; survey instruments; Crohn s disease; CD; |
Research Methods, Health Maintenance |
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 |
2014 |
Evaluation of the Patient Reported Outcomes Measurement Information System in a Large Cohort of Patients with Inflammatory Bowel Diseases
Summary Patient-reported outcomes, or PROs, can give useful information to doctors and researchers about patient health. In a study of over 7000 patients with inflammatory bowel disease, or IBD, PROs showed that IBD patients had more anxiety, depression, fatigue and sleep disturbance, and less social satisfaction than the general population. Using corticosteroids made all of the outcomes worse. These results showed that IBD patients, like patients with other chronic illnesses, were lower functioning than the general population. Full Published Manuscript Keywords social health; comorbidity; |
Lifestyle, Mental Health |
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 |