Quality of life in children and adolescents surviving cancer.

Purpose: To explore subjective and proxy reported QoL (Quality of Life) in children and adolescents surviving cancer three years after diagnosis compared with healthy controls.

Method: Case-control study including 50 children and adolescents diagnosed with cancer between January 1, 1993 and January 1, 2003 and treated at the Paediatric Department of St. Olav's University Hospital in Trondheim, Norway. Data were collected using The Inventory of Life Quality in Children and Adolescents (ILC) and the KINDL QoL questionnaires (parent and self-reports), as well as by collecting data for any somatic late effects and psychological problems from the medical records of children surviving cancer.

Results: Adolescents surviving cancer as a group assessed their QoL as similar to that of their peers. However, adolescents surviving brain tumours or those with late effects reported lower QoL and an increased number of QoL domains perceived as problematic, even many years after diagnosis and treatment. Parents generally report a poorer QoL for their children surviving cancer and a greater number of QoL domains experienced as problematic compared with parent controls.

Conclusion: To improve the child's total functioning and well-being we conclude that when planning long-term follow-up care, rehabilitation of children and adolescents with cancer, especially for survivors with brain tumours, and with late effects should particularly take into account their subjectively perceived and proxy reported QoL, in addition to their psychological problems and psychosocial functioning.