Crohn’s and Colitis Awareness Week ends today, making this a great time to explore PCORnet’s efforts to tackle these two widespread forms of inflammatory bowel diseases (IBD), both of which are incurable and invisible. Two of PCORnet’s partner networks, the ImproveCareNow Patient Powered ResearchNetwork (PPRN) and the Crohn’s & Colitis Foundation of America (CCFA) PPRN, have progressive actions in place to combat these conditions.
ImproveCareNow is a research collaborative community of over 90 pediatric gastroenterology centers working together to improve the health and care of children and youth with Crohn’s disease and ulcerative colitis through quality improvement initiatives. To treat moderate to severe IBD, ostomy surgery can be an option for some individuals. However, there are fewer pediatric ostomy patients than adult patients, which unfortunately means there are also fewer pediatric mentors to help guide young people through the unique challenges of living with a temporary or permanent ostomy. Jennie David, ImproveCareNow’s former Patient Advisory Council co-chair, is an exception. A young patient with Crohn’s disease herself, Jennie is working with other patients to minimize the stigma of IBD and ostomies with approachable tools and communication tactics to engage other young IBD patients with ostomies.
For example, she led a primary-stakeholder research project to develop an ostomy tool kit, which is written at a fifth grade literacy level and includes colorful pictures with comic elements, informative literature, and suggestions for approaching ostomy conversations with friends and family. Jennie has also created a platform for pediatric patients with IBD to come together and learn about the illness and ImproveCareNow via her @FlatJennie Twitter handle. Flat Jennie is a four-inch paper girl representing Jennie herself who travels to see patients and has created an inspirational, light-hearted community to unite patients.
CCFA Partners is another PCORnet PPRN making great strides with these conditions. With over 15,000 participants (~1% of the U.S. adult IBD population), this network has successfully engaged participants in prioritizing a patient-centered research agenda and contributing health data for research. In addition, CCFA Partners is leading a PCORnet demonstration study that will compare the effectiveness of the Specific Carbohydrate Diet (SCD) and a Mediterranean Diet in Crohn’s disease sufferers, promising new insights to this patient community.
CCFA Partners is also presenting the findings of two research studies this month at the 2016 Advances in Inflammatory Bowel Diseases Clinical and Research Conference (AIBD), taking place Dec 8-10. One study is a description of CCFA Partners participants’ experience with “pouchitis,” or inflammation of the pouch that stores stool following a restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) procedure. A key finding of this study is the fact that 82 percent of study participants reported at least one episode of pouchitis, a complication associated with worse quality of life and other patient reported outcomes.
The other study CCFA will report on at AIBD examines the utility of the newly developed Gastrointestinal Patient-Reported Outcomes Measurement Information System (GI-PROMIS) scale for measuring physical, mental, and social health in IBD patients. The results of this study suggest that the GI-PROMIS scales could be an important way to measure IBD symptoms in the future.
“We are making great strides toward Crohn’s and Colitis, but there is still more to be done,” said CCFA’s principal investigator, Michael Kappelman. “Crohn’s and Colitis Awareness Week is an excellent time to shed light on how far we have come with these prevalent conditions and inspire more good work to bring new tools and insights to patients in need.”
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.