LOOP Blog

I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.

At the end of the Spring ImproveCareNow Community Conference, I shared this painting, “You Worry about Its Success” by Hollis Sigler:

I have loved this painting since I first saw it, in part because of the feeling of anticipation that it creates. The description of this painting on the Madison Museum of Contemporary Art website says:

“There is a magical air to the night. It is a moment of expectation. Who is the hostess? Who is the guest? Where are they and when will they arrive? The title of the painting is written in delicate script at the top center of the composition. It is the voice of the hostess who is concerned that all will go right. Her worries become ours in this poignant scene of human affections. The preparations are loving, but the darkened house and absence of any human presence veil our anticipations with anxiety. All may not turn out as expected.”

About 12 of us participated in the Cincinnati Children’s enteral nutrition challenge – including physicians, nurses, and medical assistants.

Here is a summary of what we observed:

ImproveCareNow Community Conferences happen twice a year. Together we work on developing and spreading Quality Improvement (QI) and research skills and approaches; fueling our Network’s use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

As you know, the weeks leading up to an ImproveCareNow Community Conference are a few parts busy, a few parts exhilarating, and a few parts stressful (though luckily the ratio changes by the day). There is a lot to do, but our team has done it many times before and indeed our team has grown exponentially as we’ve come to consider the whole community part of the planning process. It’s hard work, but its work we’re doing together and we all look forward to celebrating together once the big event arrives.

Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.

When our dietitian first approached our Rainbow Babies & Children’s Hospital IBD team about using Exclusive Enteral Nutrition (EEN) as treatment for patients with Crohn’s disease, we had our doubts. Could simply drinking formula really help a patient with Crohn’s disease get into remission? Thanks to strong encouragement from our dietitian, Nicole, and the lovely folks at Nationwide Children’s Hospital who shared their experience with us, we began developing a protocol for using EEN for the induction of remission in patients with Crohn’s disease.

When my son was diagnosed with Crohn’s Disease in 2014, he was 10 years old.  I knew something was terribly wrong with him for a long while but had to wait many months to see a GI. By the time he was diagnosed, he had lost so much weight, could not eat and was a skeleton of his former self both physically and emotionally. Long days in the hospital were spent researching every treatment modality from every country that published scientific papers. I was told that he had to go on steroids for the short term until other medications could begin their work. Somehow, my gut told me that this was only part of the treatment story. Instead, I asked repeatedly about enteral nutrition. I was told that it would not work. The Dr. even drew out a graph for me on a smudged white board.  I kept asking “why does it not work in the U.S when it works in other countries?” The doctor avoided answering me directly but, eventually conceded that Americans like to eat and prefer to take pills. O.K., now that is a real answer!

When your child gets diagnosed with a chronic disease like Inflammatory Bowel Disease, the world becomes very overwhelming in a flash. Prior to the diagnosis, the words “Crohn’s disease” or “Ulcerative Colitis” mean absolutely nothing to patients and their families. During my journey, I have asked parents and patients about their memories of the moment at which they were diagnosed and the comments are usually similar: I had no idea how the diagnosis would change our lives. I have a husband and two kids diagnosed with Crohn’s. I have to say that each diagnosis was overwhelming in its own way. You would think that by the third diagnosis, I could handle it but it wasn’t any less overwhelming than the first. I knew too much. I feared too much. I now worried about them having simultaneous flare-ups.

My son was on EEN for about 5 weeks then switched to about 80% EN, 20% food. This was 4 years ago when he was 11 years old. We live in Los Angeles, and we did not have a lot of support when we started. I hope care teams realize how hard it is in the beginning but it does get easier. Patients and their families need a lot of support from figuring out where to get the supplies, how to work the equipment and most importantly help for the child in placing the NG tube. The best thing would be to have the family connect with another family who is already using EEN.