Health-related quality of life during post-induction chemotherapy in children with acute lymphoblastic leukemia in remission

Using a multi-attribute approach, we and others have reported on the comprehensive health status of survivors of cancer in childhood, after completion of therapy. However, there is a dearth of information about health status and associated health-related quality of life (HRQL) in children and adults with cancer, during the treatment process; a deficit which this study was intended to redress. All children (n=18) receiving 'maintenance' chemotherapy for acute lymphoblastic leukemia (ALL) at a single institution were assessed prospectively through a single cycle of therapy. Patients, family members and health care professionals used global ratings, the health utilities index mark 2 (HUI2) and mark 3 (HUI3) classification systems, and detailed descriptions of temporary states of health, to provide independent assessments of health status at weekly intervals. Utility scores were derived for each comprehensive health state and for single attribute levels of the HUI2 system, and for the temporary health state descriptions. The classification of the subjects into the most appropriate temporary health states was challenging even for older children and some of the parents. The HUI instruments were used much more easily and produced highly comparable information. The most frequently affected attributes were pain, emotion and mobility/ambulation; in that order. The global (p=0.005) and specific morbidity burdens were, as predicted, greatest in the middle of the cycle of chemotherapy, reflecting the toxicity of steroid use. HUI2 global utility scores demonstrated moderate responsiveness with an intra-class correlation coefficient of 0.43. Cyclical administration of therapy, in particular corticosteroids, produces important changes in health status and HRQL in children with ALL. The HUI are valid and responsive systems for quantifying the burden of morbidity during the treatment of cancer in childhood. These are sensitive tools which can be used in a wide array of other circumstances to quantify changes in health status.