Close-up on patient/activist Casey Jean Silvernale: The importance of patient-driven research priorities

Casey Jean Silvernale was diagnosed at age 11 with Crohn’s disease. Now, more than a dozen years later, she’s working as a clinical research coordinator in the Center for Neurointestinal Health at Massachusetts General Hospital and studying for her MCATS (the admissions test for medical schools). Casey spoke last year at our Clinical Research Strategies Conference, addressing this question: “As a patient, what would you consider to be an important and unresolved medical question?”  

Casey highlighted several key areas that need urgent attention:

Taking medications as prescribed

How can we support and improve patients’ ability and willingness to take prescribed medications? Casey reminded the audience that according to some studies, between 30-45% of patients with IBD don’t take their prescribed medications regularly, and that problem is linked with increased symptoms and/or relapses. There may be several factors making it difficult for patients to take their medications as prescribed. Some may need better information about how the medication works and why it’s needed. Other maybe be facing a cost or access issue. And for others, difficulty in taking one or more drugs may be connected to psychological issues related to dealing with a chronic disease. Drawing on her own experience, Casey said:

“We need effective strategies to address patient burnout. I know from my experience that if you start thinking ‘will I have to take this forever’ or ‘will I always be dealing with this?’ that it can take a toll that sometimes makes it hard to be willing to take medication all the time, especially if there are side effects from the meds. Going it alone makes it worse.  We need better support from IBD providers. Or maybe we need more patient support groups, or a combination of resources – but better education and support is essential.”

Emotional health

Casey reminded us that there is a strong connection between IBD and anxiety/depression. In fact, patients with IBD are at a greater risk for developing anxiety or depression. Casey said (to some embarrassed laughter from physicians in the audience):

“My doctor told me to avoid stress. Really? How about instead if we do some research and see what methods might help reduce mood fluctuations or improve stress management in IBD patients? We have data in other patient populations showing that meditation and cognitive behavioral therapy and/or neuromodulation with agents like gabapentin have helped. What works in IBD patients? And what can we learn from stress management in other disease states?”    

Sexual health

Casey reminded us that research has shown that a very high proportion of women with IBD, especially newly diagnosed and/or post-surgical women patients, experience sexual dysfunction. Yet, according to one study, only 8% of IBD providers ask patients about their sexual well-being and health. We need quality data on what helps, and how providers can help address this issues early on in treatment. 

Persistent pain despite remission

One of the big mysteries on which we need quality research is, why do so many patients still have symptoms when their inflammation seems to be under control? Casey suggested that the IBD world might learn something from the functional medicine world, where treatments like cognitive behavioral therapy and/or drugs like gabapentin have been used to relieve pain and improve bowel function and other symptoms associated with functional GI disorders.

During a coffee break, I asked several people, “What struck you the most so far?” Four attendees immediately mentioned Casey’s presentation. One gastroenterologist said, “I don’t know if I’ve ever said something as stupid as ‘avoid stress’ but I’ve come close.” Another said, “Casey made me realize how I haven’t asked patients about their sexual lives, partly because I don’t think I’m comfortable enough or know enough. But I need to at least ask the questions and find the right resources for my patients.” When I asked him how he was going to find the right resources, he paused and said, “You know, I don’t know who to ask in my practice. Which means, I’m going to ask someone at the Foundation to guide me.”

As you go through your IBD journey, take Casey’s advice and don’t go it alone. Talk to your provider about your concerns, and the Foundation is always here to help as well. Click here to find your local support group, join one of our online support groups, or reach out to the IBD Help Center at [email protected] or 888MYGUTPAIN.

Sheila Roher, MPH, is a science writer for the Crohn's & Colitis Foundation.