In the Netherlands, approximately 300 children under the age of 18 are diagnosed with ‘inflammatory bowel disease’ (IBD) every year. The questions they and their loved ones have about the disease may differ from the research priorities as set by academics, the pharmaceutical industry and subsidy providers such as ZonMw. That is why physician-researcher Jasmijn Jagt and gastroenterologist Tim de Meij (Amsterdam UMC), together with Menne Scherpenzeel, director of the Crohn & Colitis NL patient association, decided to draw up a top 10 of research questions using the method of the British James Lind Alliance ( JLA). The input of patients and their loved ones carries the same weight as that of practitioners. More than 150 research agendas have already been drawn up in this way worldwide. In the Netherlands, this method has now been applied for the third time, after an agenda for eating disorders in 2016 and one for juvenile idiopathic arthritis in 2020.
The entire process involved a steering group consisting of four children and young people with IBD, four parents and eight caregivers. During the final workshop in March 2023 the definitive top 10 of research priorities established. That research agenda was subsequently published in The Lancet Gastroenterology & Hepatology (2023; online 22 May).
The highest priority appeared to be investigating the causes of fatigue in children and young people with IBD. The question is what these IBD patients can do to feel less tired. Secondly, attention is paid to the course of the disease: how can healthcare providers predict this better and prevent a serious course of the disease? Third is the role of external factors in the development of IBD, such as nutrition, infections, medication and living environment.
One of the patients with IBD who took part in drawing up the research agenda is Yanniek den Otter. He was 16 years old when he was invited by email to join the steering committee two years ago. Den Otter: ‘The first time I thought it was a bit exciting to participate. The meetings were online and there was quite a large group of people, but I felt free to give my opinion and I was really listened to.’
Den Otter fully agrees with the final research agenda and he looks back with satisfaction on how the entire process went. He would have preferred it if the meetings had taken place physically, but that was not possible at the time due to corona measures. Researcher Jagt is also happy with the research agenda that has been drawn up. Jagt: ‘But this still needs to be translated into targeted scientific studies.’
2023-09-14 04:00:00
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