Research Ideas  

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Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

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!

Published Studies

Year Publication Categories
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
2016
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 Abstract

Keywords
patient reported outcomes; IBD; quality of life; GI-PROMIS; psychosocial symptoms

Research Methods
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; Medication
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 Quality Process 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
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
2013
Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Summary

Like many other chronic illnesses, there is inconsistent quality of health care for inflammatory bowel disease, or IBD. In this study, nearly 1000 patients with Crohn's disease or ulcerative colitis took a survey about their experiences with chronic illness care, including questions about goal setting, problem solving and follow-up. Patients who had a recent gastroenterologist visit, hospitalization, surgery, or currently had a pouch or ostomy, reported having higher quality of care. Patients with higher quality of care also reported better quality of life.


Full Published Manuscript

Keywords
care; quality of life; Chronic Care Model; chronic illness care; assessment; community; population

Lifestyle
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
2011
Quality of Life in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

In a survey of over 7000 patient with Crohn's disease or ulcerative colitis, patients had about the same quality of life for both diseases. Patients with severe ulcerative colitis had low quality of life, but quality of life returned to around average when patients had surgery to remove their colon and replace it with an internal pouch. These results show that status of inflammatory bowel disease can be an important factor in quality of life.


Full Scientific Abstract

Keywords
quality of life; community; population

Research Methods, Lifestyle

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