Published Studies
Year | Publication | Categories |
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2020 |
Responsiveness of the Patient-reported Outcomes Measurement Information System (PROMIS) Pediatric Measures to Changes in Disease Status and Quality of Life Among Children and Adolescents With Crohn's Disease
Summary Full Scientific Manuscript Keywords PROMIS; patient-reported outcomes (PROs); Crohn's; pediatric; responsiveness; |
Health Maintenance |
2020 |
Association Between Vulvovaginal Discomfort and Activity of Inflammatory Bowel Diseases
Summary Inflammatory bowel diseases (IBD) affect 200-400 people per 100,000 in the United States, about half of whom are women. Our goal was to research how common it is for women with IBD to experience vulvovaginal symptoms. For this study, we recruited women more than 18 years old with IBD (1250) who agreed to complete an online survey that asks questions about the presence and severity of vulvar or vaginal itch, burn, or irritation, vaginal discharge or dryness, and vulvovaginal pain. The survey collected information on background information and a history of their IBD activity history. Women with and withou t symptoms were compared for analyses. For the results, we found a total of 512 women reported at least 1 moderate-severe vulvovaginal symptom. All vulvovaginal symptoms except vaginal dryness were more common in women with active IBD and vulvovaginal discomfort frequently or always decreased interest in sex or ability to have sex. In conclusion, we found that women with more active IBD have increased prevalence of vulvovaginal discomfort, compared to women in remission. These symptoms affect sexual health. Full Scientific Manuscript Keywords Crohn s Disease; Ulcerative Colitis; Vaginitis; Female Patient; |
Health Maintenance |
2020 |
Transition Readiness Not Associated With Measures of Health in Youth With IBD
Summary Our objective was to describe the transition readiness (transitioning from child- to adult-centered healthcare) of children and young adults with inflammatory bowel disease (IBD) and study its relationships with age, sex, IBD activity, and measures of physical, psychological, and social health. Full Scientific Manuscript Keywords transition readiness; depression; anxiety; social health; quality of life; inflammatory bowel disease; |
Lifestyle, Health Maintenance |
2020 |
Does Reverse Causality Underlie the Temporal Relationship Between Depression and Crohn s Disease?
Summary Studies suggest that there is a temporal relationship between depression and Crohn's disease (CD) activity. We evaluated the existence of reverse causality reflected in a possible bidirectional relationship between patient-reported CD activity and depression. To research this, we studied 3307 adult volunteers with a self-reported diagnosis of CD who completed a baseline survey that included demographics, CD activity, and depression. Crohn's disease status and depression were also measured 6 and 12 months after the first evaluation. The results of the hypothesis testing showed the most support for the hypothesis stating that depression is a stronger predictor of patient-reported CD activity. In conclusion, our findings suggest that CD patients' negative self-regard is clinically important to understanding change in patient reports of their CD activity. Gastroenterologists should screen for affective-cognitive symptoms of depression in CD patients. Evaluation and treatment of depression may improve the course of CD. Full Scientific Manuscript Keywords depression; patient-reported CD activity; temporal relationship; Crohn s Disease; |
Health Maintenance, Lifestyle |
2019 |
Delayed Diagnosis of Crohn s Disease is Common and Associated with An Increased Risk of Disease Complications
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Health Maintenance |
2019 |
A Diet Low in Red and Processed Meat Does Not Reduce Rate of Crohn s Disease Flares
Summary Diet may be an important factor in the development and progression of IBD. A previous study demonstrated that patients with ulcerative colitis were more likely to flare with increased consumption of red and processed meats. We sought to examine whether increased consumption of red and processed meats was associated with Crohn's disease (CD) flares. To do this, adults with CD were recruited from IBD Partners. Patients who were in remission were randomly assigned to groups that consumed a minimum of 2 servings/week of red or processed meat (118 patients) or not more than 1 serving per month (96 patients) for 49 weeks. The primar y outcome was relapse of CD, defined as increase in short Crohn's Disease Activity Index or a need for surgery or a need for new medication. During the trial, patients in the high-meat group reported compliance with eating 2 or more servings of red or processed meat during 98.5% of weeks compared to 18.8% of weeks for the low-meat group. In an analysis of data from the FACES trial, we found that among patients with CD in remission, amount of red and processed meat consumption was not associated with risk of flare. Full Scientific Manuscript Keywords diet; red meat; processed meat; Crohn's disease; CD; Flares; |
Lifestyle, Health Maintenance |
2018 |
High Patient Activation Is Associated With Remission in Patients With Inflammatory Bowel Disease
Summary 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. Full Scientific Manuscript Keywords patient activation; PAM; Patient Activation Measure; surgery; Crohn s disease; CD; ulcerative colitis; UC; remission; |
Lifestyle, Health Maintenance |
2018 |
Crohn s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network
Summary Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants' experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN. Full Scientific Manuscript Keywords PPRN; Disease management; Online resources; |
Lifestyle, Health Maintenance, Research Methods |
2018 |
Psychometric evaluation of the IBD-specific Anxiety Scale (IBD-SAS): A novel measure of disease-related anxiety for adolescents with IBD
Summary Full Scientific Manuscript Keywords adolescents; anxiety; assessment; chronic illness; inflammatory bowel disease; |
Lifestyle, Health Maintenance |
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 |
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 |
2018 |
Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life
Summary Little research has been done exploring how inflammatory bowel disease (IBD) affects sexual health. In this study, investigators asked a large group of IBD patients to complete a 6-question online survey. The questions asked about sexual interest and satisfaction. Researchers found that these IBD patients had similar levels of sexual interest as the general population, but they had lower sexual satisfaction and lower quality of life as it related to their IBD. Older age, disease activity, depression, anxiety, and pain were associated with these findings. Exploring these sexual health topics during clinical encounters can help improve IBD quality of life. Full Scientific Manuscript Keywords Sexual dysfunctions; Physiological; Sexual health; Inflammatory bowel disease; Quality of life; |
Lifestyle, Health Maintenance |
2018 |
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases
Summary 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. Full Scientific Abstract Keywords body image; body image dissatisfaction; BID, anxiety; depression; mood disorder; psychosocial; pediatric; children; kids; K&T; kids & teens; IBD Partners Kids & Teens; |
Lifestyle, Health Maintenance, Mental Health |
2017 |
Sports Participation in Youth With Inflammatory Bowel Diseases: The Role of Disease Activity and Subjective Physical Health Symptoms
Summary Full Scientific Manuscript Keywords inflammatory bowel diseases; physical activity; sports participation; |
Lifestyle, Health Maintenance |
2016 |
Infertility Care Among Men and Women With Inflammatory Bowel Diseases in the CCFA Partners Cohort
Summary 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. Full Scientific Abstract Keywords infertility; pregnancy; sexual health; infertile; sexual function ; |
Health Maintenance |
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 |
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 |
Patient-reported outcomes measurement information system in children with Crohn's disease
Summary Full Scientific Manuscript Keywords patient reported outcomes; PROMIS; Crohn s disease; anxiety; depression; fatigue; peer relationships; quality of life; |
Lifestyle, Health Maintenance |
2016 |
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease
Summary 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. Full Published Manuscript Keywords cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health; |
Research Methods, Study Updates, Health Maintenance |
2015 |
Avoidance of Fiber is Associated with Greater Risk of Crohn's Disease Flare in a 6 Month Period
Summary 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. Full Published Manuscript Keywords active disease; fiber; flare; prevention; risk; Crohn s disease; Crohn s; CD; |
Diet, Alternative Therapies, Lifestyle, Health Maintenance |
2015 |
Exercise Decreases Risk of Future Active Disease in Patients with Inflammatory Bowel Disease in Remission
Summary 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. Full Published Manuscript Keywords active disease; flare; prevention; risk; |
Exercise, Lifestyle, Alternative Therapies, Health Maintenance |
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 |
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 |
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 |