Standardized quantitative assessment of brain tumor survivors treated within clinical trials in childhood

Important morbidity and impairment of life quality arises from both the primary pathology and therapeutic interventions in children with central nervous system (CNS) tumors. Standardized and systematic collection of morbidity data is a prerequisite of clinical trials in this field. The perception of the survivor is paramount in the determination of quality of life as this variable is dependent on the beholder. Comprehensive assessment of outcome following therapeutic intervention should evaluate this in parallel with other physical and psycho-social outcome parameters. A structured, simple schema for the evaluation of survivors of childhood CNS tumors is presented. It is intended to be easily applicable by clinicians within the everyday clinical setting. Information relating to pre- and post-operative states, function, health status and emotional and psychological well-being is collected at regular intervals from diagnosis. Re-integration into society and independence are evaluated. Children self-complete health-status assessments where appropriate. Evidence to support this is presented. The schema is intended to provide a basic framework for the monitoring of health status following treatment of CNS tumors in childhood. Regular assessments may identify individuals in need of more detailed investigation and further understanding of the evolution of morbidity in this cohort. Survivors' perception of the impact of documented dysfunction on their health-related quality of life will be determined. Optimization of the planning of future clinical service provision and therapies will result.