Reflecting on the Pediatric Inflammatory Bowel Disease (Netherlands) PSP

An Interview with Tim de Meij

In the Netherlands there are approximately 3,000 children and adolescents (up to 18 years of age) who have chronic inflammatory bowel disease (IBD) such as Crohn's disease or ulcerative colitis. Together with their parents and healthcare providers, the children and adolescents made a Top 10 priority list with ten questions they would like to get answers to. Pediatric-gastroenterologist Tim de Meij of the Emma Children's Hospital Amsterdam was one of the healthcare providers who participated in the process initiated by the K-ICC (an alliance of pediatric-gastroenterologists) and the patient organization Crohn & Colitis NL. 

Tim, how do you look back on the process?

It was a great, but also intensive process. Beforehand, I thought it would all be very swift and easy, but the process took up much more time. And rightly so, that time is really necessary. The really unique thing for me was how healthcare providers such as doctors, psychologists, physiotherapists and dieticians worked together with children and adolescents with IBD and their parents. Ultimately, these are the people who it’s all about. Some of the topics that ended up in the top 10 were a surprise for the healthcare providers. This just goes to show that, as a doctor, you can come up with all kinds of things that you think are important for children, but the persons it’s all about, sometimes think otherwise.

What is the added value of JLA?

For me the structured way in which a decision is finally reached is really an added value of the JLA process. And also monitoring throughout the process that each party has an equal voice. The voice of children and adolescents, and parents is as important as that of the healthcare providers. For example, it is the wish of both the youngsters and their parents to be able to stop taking medication if the youngster is stable and in remission. Because they worry about the long-term effects of medication. That's something physicians don't think about enough; it was really our blind spot.

What other new insights around treating children and adolescents with IBD have you gained?

The impact of fatigue on the lives of the youngsters, was really an eye opener for the healthcare providers. Even if the IBD is in remission, they still often suffer from fatigue. I have been discussing the subject extensively in the consultation room ever since. I understand the children and youngsters much better now. And as a result, they get the feeling they are being heard. 
And I now also discuss the option of stopping medication. I didn't do that before.

It has become clear to me that children and youths want much more control. That is also important, because it is about their lives.

Which topic from the research agenda are you already doing more research on?

We are currently investigating a possible long-term complication such as colon cancer. We are investigating how likely it is that children and adolescents develop colon cancer as a result of the disease or medication they use. The research shows that we are now probably doing too many colonoscopies on the children and youths to investigate the possibility of colon cancer. Whilst the Top 10 says they want alternatives for colonoscopies, because they find them so annoying. 

Also, I would really like to start researching fatigue so we can really address this problem.

Finally, do you want to say anything else about the process?

This collaboration with Crohn & Colitis NL has greatly strengthened our bond. This is important because the patient organization is the voice of the children and youngsters with IBD. It was very special to witness the process with all parties involved. It was a well-oiled machine. Which even though it took a lot of time, is really the most structured way to tackle the process. With the result, a beautiful document with 10 research questions. In short, a process I can highly recommend.