Grootenhuis group

The diagnosis of cancer in a child is one of the most stressful events that can happen to a family. From birth till adulthood children are in a process of physical, cognitive, emotional and social development. Depending on the child’s developmental level special needs have to be met in the context of the family (parents, siblings), the medical context (type of diagnoses and treatment), but also the enlarged social environment (friends, school, health care workers). The whole family has the difficult task to adjust to a situation dominated by the stresses of long lasting uncertainty and uncontrollability. Paying attention to the child and family’s developmental trajectory is one of the core missions of the Princess Máxima Centre for Pediatric Oncology.

(Neuro)psychological outcomes depend on risk and resilience factors- including family background and premorbid functioning, their coping-and social resources, but most of all on interventions which are provided in the medical context (e.g. psycho-education; preparation to medical procedures) as well as on individual level or in groups setting . Furthermore, the webbased KLIK portal, in which patient reported outcomes are fed back, has shown that communication in clinical practice results in more attention for psychosocial functioning, and satisfaction with care improved.

The development of the Princess Máxima Centre for Pediatric Oncology with the main focus on improving survival and quality of life provides the opportunity to take a national, systematic approach to systematic approach to psychosocial care and development of intervention for all family members, which has to be evaluated and studied upon effectiveness. A major goal of psychosocial research and practice is to decrease the burden of treatment and improve the quality-of-life of pediatric cancer patients, survivors, and their families across the lifespan. Great strides have been made in research about psychosocial outcomes and developing psychosocial interventions for the treatment of psychosocial outcomes in childhood cancer over the last three decades, but more remains to be done. The coming years new research projects will start and wherever possible available interventions will be adapted and implemented, and effectiveness will be evaluated.

Research will focus on:

• (neuro)psychosocial outcomes (quality of life; psychosocial distress) and determinants throughout the treatment trajectory

• evidence-based interventions: developing, testing, and implementation of innovative interventions

• appropriate questionnaire development