Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia.

Abstract

Pediatric patients with brain tumors (BT) are often excluded from health-related quality of life (HRQOL) studies even though they experience more severe disease and treatment-related sequelae than children with other types of cancer. Parent proxy assessments of HRQOL allow for greater inclusion of children who are developmentally immature, physically ill, or cognitively impaired. Parents of children ages 2-18 years who were diagnosed at Childrens Hospital Los Angeles and Children's Hospital San Diego with BT (n = 86) or acute lymphoblastic leukemia (ALL; n = 170) evaluated their children's HRQOL over the previous week using the parent-proxy versions of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core scales, the PedsQL 3.0 Acute Cancer Module, and the PedsQL Multidimensional Fatigue scales. Multiple regression analyses were used to determine the independent effect of the child's diagnosis on HRQOL. Separate analyses were conducted for patients receiving treatment, patients who had not received treatment for < 12 months, and patients who had not received treatment for > or = 12 months. Patients with BT exhibited more problems than patients with ALL in the physical, social, psychosocial, school, cognitive, and fatigue domains of HRQOL. The Core Physical Health, Core Psychosocial Health, and Fatigue Total scores for patients with BT demonstrated peak improvements for children who had not received treatment for < 12 months and sharp declines for children who had not received treatment for > or = 12 months. The Core Physical Health and Fatigue Total scores for patients with ALL were highest (better HRQOL) for those who had not received treatment for > or = 12 months. Pediatric patients and survivors of BT experienced more fatigue and HRQOL problems than patients with ALL, and HRQOL differed by treatment status.