In this area you will be able to:
- Propose, vote on, and discuss research ideas
- View current studies
- View published research
Here, you can submit a research idea to the community, cast your votes, and discuss research ideas proposed by other members. Please make your research question as specific as possible. Other members will vote on your research idea, and we will prioritize research ideas with the most votes.
You are allowed to vote for your own proposed research idea if you want. However, you can only vote for a total of five research ideas. If you have already cast your five votes and an idea you like even more is proposed, you can change your votes at any time to reflect your current preferences.
The research team will review all submitted ideas and provide a response to you and to the community. If your idea leads to an IBD Partners Study, you will have the opportunity to serve as a patient collaborator on the research team for that study.
We encourage you to prioritize the ideas that are most important to you, even if the research team determines that your idea is not a good fit for IBD Partners. We will share ideas labeled “Not a Good Fit” with researchers outside of our network when appropriate. We want to make sure all of your votes count!
Thanks for your participation in this important platform to help the IBD research community understand what research questions are important to patients. We are passionate about finding answers to your questions!
A Novel Patient-Reported Outcome-Based Evaluation (PROBE) of Quality of Life in Patients With Inflammatory Bowel Disease
In this study, researchers were interested in creating a new, shorter survey to measure health related quality of life (HRQOL) in patients with IBD. To do this, they came up with new patient-reported survey questions and compared them to questions already being used. They were able to create a shorter, 6-question survey known as the PROBE that measures HRQOL just as well as longer instruments. The researchers believe that this shorter survey will make it easier to assess HRQOL among patients with Crohn’s disease and ulcerative colitis when providers treat patients in the clinic, and when IBD is eva luated in future research studies.
Full Scientific Manuscript
quality of life
Variation in Care of Inflammatory Bowel Diseases Patients in CCFA Partners: Role of Gastroenterologist Practice Setting in Disease Outcomes and Quality Process Measures
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
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|