More Than Education: Tackling the Intricacies of Crohn’s Disease

May 31, 2013
Leaders at the Crohn's & Colitis Foundation of America (CCFA) and Dartmouth-Hitchcock Medical Center have teamed up to better educate patients with Crohn’s disease. The web-based, interactive decision aid helps patients not only understand the complex disease, but the potential benefits and risks of treatments. Corey Siegel, M.D., the decision aid’s medical advisor, says it’s more than just a patient education tool.

One of the challenges that physicians face is a severe time limit imposed on the average patient visit. In many cases, it’s only 15 minutes. To examine and advise patients on basic conditions and treatments in only 15 minutes can be extremely challenging. Doing it for complex conditions, like Crohn’s Disease for instance, seems downright impossible.

To help counter this, Crohn's & Colitis Foundation of America (CCFA) and the Lebanon, N.H.-based academic research and clinical institution, Dartmouth-Hitchcock Medical Center have teamed up to create an interactive, web-based decision aid that aims to educate patients on the disease. According to Corey Siegel, M.D., the decision aid’s medical advisor and director of the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock, there are two factors that have made something like this decision aid not only necessary, but helpful for doctors and patients.

“The most common time for diagnosis [of Crohn’s disease] is when you’re in your teenage years and twenties,” explains Dr. Siegel. “Most people that age aren’t familiar with the idea of having a chronic disease, and the idea that we’re not just treating you for today to make you feel better, but we’re also trying to prevent complications down the road.”

But explaining the complications of the disease is just one half of the battle, Siegel says. There’s also a lot to explain about the disease’s medications.

“After we educate them about the basic facts of the disease, the medications that are most effective for the disease come with side effects that need to be discussed. Although there are a lot of side effects listed that we discuss, the ones that concern patients, parents, and doctors alike are serious infections that could even be life threatening, and certain cancers,” he adds.

Non-Unidirectional Education

Corey Siegel, M.D.

To create the web-based decision aid, the CCFA and Dartmouth-Hitchcock recruited Chicago-based patient education software company, Emmi Solutions. Emmi developed a web-based program that includes a 25-minute video, with an overall overview of Crohn’s disease and its long-term complications, as well as the benefits and risks of treatment options. The solution also caters to patients, allowing them to clarify their views, pick out what’s important to them, and choose their preference for treatment.

“It’s not really a unidirectional education program. There are a lot of programs where you can learn about the disease and treatments, but this really leads you through a specific treatment decision,” Siegel says.  What the aid allows patients to do is understand their own preference for treatment, so when they go back to the doctor, they can better express what’s important to them.

Already, Siegel and company have piloted the aid at Dartmouth-Hitchcock with patients in focus groups as well as in practice over the last few months. Thus far, the feedback has been generally positive. “I believe they felt empowered, that they not only had more information, but were really being asked what their preferences were for treatment, as opposed to a treatment being bestowed upon them,” he says.

Risk Predictor Tool Coming Soon

As a practicing doctor himself, Siegel understands that physicians want to give their expertise. They also have a hard time giving up control of the conversation with patients. To those who fall into this category, he says the CCFA and Dartmouth-Hitchcock have been careful to ensure that all of the information in the decision aid is evidence-based and has been peer reviewed by three different inflammatory bowel disease experts.

Furthermore, the script in the video is being continually worked on, Siegel says. With the web-based system, it’s fairly easy to review and update the content if necessary.

More than just these continual updates, Siegel says the work being done in this area by the CCFA and Dartmouth-Hitchcock is far from over. He says they are planning to expand the program by creating a module that will compliment the decision aid. After the decision’s video ends, the module will act as a risk prediction tool, based on the patient’s characteristics, the disease’s characteristics, and some blood test markets.

“That will really help us sort out high-risk versus low-risk patients, and will help us clarify which patients need which medications,” Siegel explains. “In addition to predicting how severe or controlled their disease might get, this prediction tool could also help them see how certain medications would influence their disease.”

That addition, Siegel notes, is being developed in studies, thanks to a grant from the Agency for Healthcare Research and Quality (AHRQ).  Also, Siegel says a similar program is being developed for ulcerative colitis disease.

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