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Psychological care in the ‘later’ phase

After childhood cancer treatment, children and adolescents may continue to experience physical, emotional, cognitive, and social effects. Parents may also continue to experience anxiety and stress, partly due to the threat of a possible return of the cancer.

Children

Children and adolescents may continue to experience difficulties in various areas after treatment, such as:

  • Long-term effects, including school problems due to neuropsychological limitations

  • Late effects of treatment, such as cardiac problems or hormonal disorders

From five years after diagnosis, children and adolescents are invited to attend the LATER clinic. Here, they are screened for secondary tumors and other late effects. The physician can also provide advice on lifestyle and health. For children treated for a brain tumor, it is important to monitor neuropsychological functioning and, if needed, involve school-based support or a rehabilitation center at an early stage.

Research shows that children and adolescents may experience a reduced quality of life even years after treatment, particularly due to limitations in physical and social functioning. Among young adults, developmental milestones often occur later than in their peers. A smaller proportion has paid employment or is married or living with a partner. Some young people experience mood swings and symptoms of PTSD.

At the same time, many children show resilience. Some survivors even report a better quality of life than their peers, a phenomenon known as post-traumatic growth or response shift. Experiencing a serious illness can lead to greater perspective and a changed outlook on life. Emotional disorders such as anxiety and depression are relatively uncommon in this group.

The Princess Máxima Center monitors the health and well-being of survivors through the KLIK portal. This online platform uses questionnaires, Patient Reported Outcomes or PROs, to identify and discuss psychosocial problems. Discussing these outcomes in clinical practice improves the identification of problems, communication between health care professionals, parents, and patients, and overall satisfaction with care.

Children and adolescents who need psychological support after treatment usually receive this from a psychologist close to home. It is important that these psychologists are aware of the impact of medical treatments and of the anxiety and stress children and adolescents may experience around relapses or late effects. Complaints such as uncertainty, low mood, fatigue, anxiety, PTSD symptoms, and cognitive or social difficulties are common. An adaptive approach that builds on the client’s strengths, combined with cognitive behavioral therapy, is often effective for this group.

Literatuur

  • Brown, R. T., Madan‐Swain, A., & Lambert, R. (2003). Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers.  Journal of Traumatic Stress, 16(4), 309-318. https://doi.org/10.1023/a:1024465415620

  • Grootenhuis, M.A., Aarsen, F., & Van den Bergh, E. (2001). Pscyhologische behandeling bij kinderen met kanker. In S. Duijts, R. Sanderman, M. Schroevers, & T. Vos (Eds.), Psychologische patiëntenzorg in de oncologie (pp. 323-334). Uitgeverij Van Gorcum.

  • Grootenhuis, M.A., Maurice-Stam, H., & Van Litsenburg, R.R.L. (2019). Psychosociaal onderzoek in de kinderoncologie. In G.J. Kaspers, N. Dors, W. Luijpers, & Y. Benoit (Eds.), Leerboek kinderoncologie (pp. 465-474). De Tijdstroom.

  • Kazak, A. E., & Noll, R. B. (2015). The integration of psychology in pediatric oncology research and practice: Collaboration to improve care and outcomes for children and families. American Psychologist, 70(2), 146-158. https://doi.org/10.1037/a0035695

  • Michel, G., Brinkman, T. M., Wakefield, C. E., & Grootenhuis, M. (2020). Psychological outcomes, health- related quality of life, and neurocognitive functioning in survivors of childhood cancer and their parents. Pediatric Clinics of North America, 67(6), 1103-1134. https://doi.org/10.1016/j.pcl.2020.07.005

  • Schepers, S. A., Sint Nicolaas, S. M., Haverman, L., Wensing, M., Schouten van Meeteren, A. Y., Veening, M. A., Caron, H. N., Hoogerbrugge, P. M., Kaspers, G. J., Verhaak, C. M., & Grootenhuis, M. A. (2017). Real-world implementation of electronic patient-reported outcomes in outpatient pediatric cancer care. Psycho-Oncology, 26(7), 951-959. https://doi.org/10.1002/pon.4242

  • Stam, H., Grootenhuis, M. A., Brons, P. P., Caron, H. N., & Last, B. F. (2006). Health‐related quality of life in children and emotional reactions of parents following completion of cancer treatment. Pediatric Blood and Cancer, 47(3), 312-319. https://doi.org/10.1002/pbc.20661

  • Vrijmoet-Wiersma, C. M., van Klink, J. M., Kolk, A. M., Koopman, H. M., Ball, L. M., & Egeler, M. (2008). Assessment of parental psychological stress in pediatric cancer: A review. Journal of Pediatric Psychology, 33(7), 694-706. https://doi.org/10.1093/jpepsy/jsn007