Published Studies
Year | Publication | Categories |
---|---|---|
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 |
Home Infusions for Inflammatory Bowel Disease Are Safe: US Experience and Patient Perspectives
Summary Infusing biologic agents, such as infliximab and vedolizumab, for the treatment of IBD in a patient's home is becoming increasingly common. Smaller studies have raised concern about the safety of infusing biologic agents at home. However, the large-scale national experience with safety of home infusions has not been reported. Additionally, the patient experience with home infusions is unknown. Therefore, we conducted a mixed-methods study to better understand home infusions of infliximab and vedolizumab for patients with IBD. Full Scientific Manuscript Keywords Crohn s disease; ulcerative colitis; inflammatory bowel disease; home infusion; treatment; therapy; home health services; safety; |
Procedures and testing |
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 |
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 |
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 |
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 |
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Subjects With Inflammatory Bowel Diseases
Summary 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. Full Scientific Manuscript Keywords patient reported outcomes; IBD; quality of life; GI-PROMIS; psychosocial symptoms; |
Research Methods |
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 |
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 |
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 |