PI: Prof.dr. Martha Grootenhuis
The development of the Princess Máxima Center for Pediatric Oncology with the main focus on improving survival and quality of life provides the opportunity to take a national, systematic approach to psychosocial care across the family, which has to be evaluated and studied upon effectiveness.
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
Schepers SA, Sint Nicolaas SM, Maurice-Stam H, Haverman L, Verhaak CM, Grootenhuis MA. Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis. (2017) Cancer 124(2):381-390. Pubmed PMID: 28902391
Schepers SA, Sint Nicolaas SM, Haverman L, Wensing M, Schouten van Meeteren AYN, Veening MA, Caron HN, Hoogerbrugge PM, Kaspers GJL, Verhaak CM, Grootenhuis MA. Real-world implementation of electronic patient-reported outcomes in outpatient pediatric cancer care (2017). Psychooncology 26(7):951-959. Pubmed PMID: 27502744
de Ruiter MA, Oosterlaan J, Schouten-van Meeteren AY, Maurice-Stam H, van Vuurden DG, Gidding C, Beek LR, Granzen B, Caron HN, Grootenhuis MA. Neurofeedback ineffective in paediatric brain tumour survivors: Results of a double-blind randomised placebo-controlled trial. (2016) Eur J Cancer 64:62-73. Pubmed PMID: 27343714
Sint Nicolaas SM, Schepers SA, Hoogerbrugge PM, Caron HN, Kaspers GJ, van den Heuvel-Eibrink MM, Grootenhuis MA, Verhaak CM. Screening for Psychosocial Risk in Dutch Families of a Child With Cancer: Reliability, Validity, and Usability of the Psychosocial Assessment Tool. 2016. J Pediatr Psychol ;41(7):810-9. PubMed PMID: 26715054
Steur LMH, Visser EH, Grootenhuis MA, Terwee CB, Kaspers GJL, van Litsenburg RRL. Psychometric properties and Dutch norm values of the Children's Sleep Habits Questionnaire in toddlers. (2017) Sleep Med. 34:57-63. Pubmed PMID: 28522099