Neurocognitive and psychosocial outcome of childhood brain tumor survivors

Learning difficulties and related environmental problems have not been systematically listed in Belgian childhood brain tumor survivors (CBTS). Management strategies are being formulated internationally for some groups of children at high risk for neurodevelopmental problems (e.g., very low birth weight infants).  However, no specific strategies for screening and management of learning problems in CBTS have been developed.  Moreover, little is known about care trajectory-related patient and parental experiences in CBTS.  While a great deal of research is focused on finding a cure for brain tumors, quality of life is often overlooked.


Ongoing project:

Care and educational trajectories of childhood brain tumor survivors: inventory and exploration of possible management strategies.

PI: Philippe Paquier
Co-I: Anna Jansen, Johan Bilsen, Lieve Peremans, Patrick Van Bogaert (ULB)
Collaborators: Jutte Van Der Werff Ten Bosch, Inge Gies, Eva Cloet, Reginald Deschepper, Elke Van Hoof, Eric Sariban (ULB), Danielle Balériaux (ULB), Olivier De Witte (ULB), Daniel Devriendt (ULB), Paul Meijnders (UA)
PhD students: Stephanie Vanclooster, Sophie Genin (ULB)

This multi- and transdisciplinary research project jointly led by the Vrije Universiteit Brussel (VUB) and the Université Libre de Bruxelles (ULB) aims at optimizing the care trajectory and the management of learning difficulties and related environmental problems in CBTS, in order to allow these children to catch up with their peer group as early as possible after their medical treatment, to reintegrate school in optimal conditions, and to have a good quality of life.  The project consists of two interrelated parts which are being carried out in parallel, with the following aims: (Part I - ULB) to make an inventory of learning difficulties and related environmental problems in CBTS, and to assess the factors which influence the implementation of a potential management package based on the existing practice for learning difficulties, and (Part II - VUB) to identify key events in the care trajectory following surgery for childhood brain tumor, and to qualitatively analyze how patients and parents experience care-related decisions, with special attention directed to the interactions between patients and parents, and care professionals.  The findings of this pilot project in CBTS treated at VUB-UZ Brussel and ULB-Hôpital Erasme might later on be verified in a larger, multi-university context and, so, constitute a starting point for an outcome study.  This in-depth analysis is aimed at (a) delivering recommendations for early screening of learning difficulties and related environmental problems, and their follow-up, and (b) optimizing the care trajectory by identifying the key events in post-surgery and rehabilitation care based on the patients’ and parents’ experience, in order to develop an explanatory model for care-related decisions that allows for optimal care trajectory counseling.

 

 

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