Support Children After Intensive Medical Treatment

Thanks to medical innovations, more and more children are recovering after major treatments such as heart surgery or stem cell transplantation. But their challenges don’t end there. Eight out of ten children and their families experience long-term medical and psychosocial consequences. Researchers Arno Roest and Anne de Pagter are investigating how they can receive better support. Anne explains: “A crucial part of this is ensuring that children’s voices are heard, both during and after treatment.”

Support Children After Intensive Medical Treatment
Thanks to medical advancements, many children with serious illnesses or conditions receive successful treatment in Leiden. More children than ever survive complex medical procedures, such as heart surgery or stem cell transplantation, and go on to live longer lives. This is an incredible achievement, but “recovery” does not always mean that everything is back to normal.

Arno Roest, a paediatric cardiologist, and Anne de Pagter, a paediatric haematologist, are researching how children and their families can receive better support following complex medical treatment.

Trauma and Challenges at School
"When a child has undergone a successful treatment, it may seem like the problem has been solved—but that’s not the case," says Arno. "Eight out of ten children and their families face long-term consequences, which can be deeply impactful. Many struggle with anxiety, trauma, or grief. Children may have difficulties keeping up at school, participating in sports, or later, maintaining a job. Parents often experience immense stress, which can lead to relationship issues or even divorce."

 "Beyond medical treatment, we need to take a much broader approach, preparing children and their families early on for the challenges they may face during and after treatment," Arno continues. "That way, they know where to turn when problems arise, and we can support them with psychologists, medical educators, healthcare professionals, and school-based assistance."

Focusing on Wellbeing as Well as Recovery
Anne adds: "At the moment, this kind of support is not yet in place. That’s why we want to conduct thorough research to determine the most effective interventions. Our goal is not just ‘90% survival’, but ‘100% wellbeing’—because true recovery means more than just survival. A crucial step in this is ensuring that children’s voices are heard."

"One concrete example: children with congenital blood disorders often undergo high-dose chemotherapy. Many of the teenagers in my clinic develop permanent bald patches as a result. This isn’t something that typically appears in medical evaluations, yet these teenagers tell me: ‘The bald patches are the worst part of it all.’ Because we identified this, treatment has been improved, and children are no longer left with permanent hair loss."

Working Together with Children and Experts
This research brings together experts from multiple fields, including education, social sciences, and law. "We put specialists of Leiden University at the same table as children and their families, because for us, lifelong healthcare means improving the future for the next generations," says Anne.

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