Every year, around 600 children in the Netherlands are diagnosed with cancer. Thanks to improved treatments, more and more children are surviving their disease. However, they are also at risk of developing long-term side effects of treatment, known as late effects. This makes high-quality care after treatment for childhood cancer essential.
When a child receives the flower bead marking the end of treatment, their care shifts from primary treatment to follow-up care. After about five years, this changes again – this time to long-term follow-up care, provided at the Máxima’s LATER outpatient clinic, and eventually from pediatric to adult care.
PhD candidate Jikke Wams from the Kremer Group coordinated the development of the guideline. She explains: 'The transition to a new phase of care is often a significant moment. We see that moving from treatment to follow-up care, and from pediatric to adult care, can have a big impact. Care needs to evolve alongside the child’s development. What a ten-year-old needs is very different from what is appropriate for a young adult.'
Guideline for smooth transitions
The new guideline was developed within a broad European network of experts and people with lived experience, the EU–CAYAS–NET consortium. Experts from the Máxima with experience in drafting clinical guidelines contributed to this effort. A total of 44 strong recommendations were formulated to support the transition from short-term to long-term follow-up care and from pediatric to adult services. These recommendations are based on scientific evidence as well as on the experiences of survivors, parents, and healthcare professionals.
One example is the recommendation that every child should receive a clear overview of their follow-up care and the different phases involved at the end of treatment.
Renée Mulder, postdoctoral researcher in the Kremer Group and lead author of the study, says: 'What makes this guideline unique is that we captured the entire process of care transition, and from the very beginning included the voices of cancer survivors. This ensures that the care truly matches what is needed in the long term.'
Implementation at the Máxima and beyond
In the coming period, the guideline will be implemented at the Princess Máxima Center, as well as in pediatric oncology centers in Barcelona and Vienna. The new YARN network (the European Youth Cancer Network), which originated from the EU–CAYAS–NET consortium, plays an important role in this process. YARN is a European collaboration between young people, healthcare professionals, researchers, and policymakers, dedicated to improving quality of life after childhood cancer. The Máxima actively supports this network.
Jaap den Hartogh, involved in both EU–CAYAS–NET and YARN and working within the Kremer Group and the LATER outpatient clinic, highlights the importance of the guideline for survivors:'Children who survive cancer may face late effects later in life, so they continue to need medical care. A well-coordinated transition from pediatric to adult care is crucial to ensure that they keep receiving the right support as they grow older. This guideline helps us prepare them better for life after childhood cancer.'
This research was made possible through support from the EU4Health Programme (grant agreement number 101056918).